Thank you Elaine – another great example…
After more than 48 hours now, I’m still where I was on Monday. I wish things have changed and I have left my escape, but I haven’t.
I wish I was writing to share that I found that direction that I mentioned in my last blog “Tears”, but I still haven’t found it.
I lost a little bit more of who I am today. I let a part of this horrible disease show for a few horrible moments that I can never take back. Am I in the wrong? Dealing as a PWD (Person with Dementia), it’s those moments that we are truly not in control of our words or our actions. It breaks my heart that I’m getting worse and that it’s showing more and more to those I love. But since Monday, I have been truly heartbroken inside. I feel like my life has been ripped out of my hands again. The realization hit me today of the power that one person can hold over me. It’s astounding, to say the least. What control, what a force within my soul, what power. And I’m at a loss – still, by this one person.
I just finished a long talk with my husband after today’s meltdown and I’m blessed to say he finally has a better understanding of what I’ve been feeling these past couple of days. You see, he thought regardless of others around me, that I had forgotten about him. I have not, nor ever will. He’s still my rock and my strength, even when I don’t think there’s any strength around me. I love him so much and I am so very blessed that he’s in my life, and that he stays by my side through all of this. I’m not sure many people would be able to do that, and I’m seeing more and more are leaving because of it.
So, when I say “all this”, you would have to read all of my blogs to get a sense of what I’ve been through in this disease, then spend time with me, at home and at my doctors. Then maybe a little bit of enlightenment will be had. But truly, unless you have the disease, it’s very hard to understand what goes on in our life and in our minds. Even as my husband has been by my side through every horrible minute, he understands a great deal and it breaks his heart over and over, but still, he has no idea what my thoughts are, nor what my breaking point is anymore. Though, at times, neither do I. They are now more spontaneous, as I’m progressing more into this fog of uncertainty.
There’s no one out there that can tell either myself or fellow PWD friends, when and how we will progress or live. They have great assumptions by testing and previous people with the same symptoms. But no one really knows. But the one fact that I have found over countless years of my own research, that no one has lived past ten years from their diagnosis. Now, I’m no expert, but ten years from their diagnosis is a broad range in my mind. You see, when you are diagnosed, there’s no definitive test you take to say yes or no. It involves months to years of testing of great multitudes till many experts finally agree that this is what you have. So who knows how many years before you actually started showing the signs. Ten years, huh? Well I’ve been officially diagnosed since 2011. That means I have about 6 years left, if I’m “lucky”. That’s without any complications of any other diseases or illnesses that come along when your immune system is put to the test over and over. Well, I have not only Early Onset of Alzheimer’s but I also have Chorea and Dystonia along with a few other medical issues that interfere with these diseases. And when I say interfere, I mean “deadly” interferences. As I’m dealing with now, with my breathing problems, part of my liver not working and fluid around my heart. So, yes, this has not been easy.
But through these years and all of this, I held onto this thread of hope. This future I called it in “Tears”, that would lead me to some comfort, happiness, and surrounded by those dear to me in my last few years. Also, never giving up hope in those years for a miracle cure or even a miracle to slow down the process by a few more years. When that was taken away from me I was truly lost.
My husband told me tonight that no matter what I’ve been through, I always got through it and found the “silver lining” within every trial. Yesterday, a friend, Tru, sent me a beautiful blog she wrote to help me find that silver lining. I’m still escaping in my own mind right now because it’s the only way for me to cope, but I do hold out for that little miracle Tru gave me, through words of her own, that I know I need. Hopefully as the sun rises again tomorrow, maybe this fog will lift enough to process and understand what I’m reading and be able to move forward. But as of tonight, I still see no reason to go on. That’s why I’m so scared, still.
In life I know many of us go through so many ups and downs. That we encounter things that completely break us and we try and figure out for years to come on how to survive it and live again. I’ve been lucky with my “encounters” to always fight back and to reclaim my own life again. I just can’t seem to figure out how to do it this time. I wish I could, boy do I wish I could.
As I close, I’m sorry to those I love. I’m sorry that I can’t seem to find that fight and hope. But, one thing I’ve learned from another great friend, even though I was extremely hesitant when she shared with me about doing a blog, that I am still writing. I am still sharing. Maybe that’s my new escape, and that’s ok too. It may not be an answer to what I need right now, and I know within it it may not be what stops me from giving up, but I’m still sharing, writing and expressing how I feel. Again, you know by now how private I am, so I guess this is after all a good thing. We will see …
Black and White ~ Photography … My friend Gill. Beautiful!! Please click to see her beautiful photography and her amazing and …
very inspiring, thank you!!
From my perspective, it seems the two things carers often forget, or don’t acknowledge, is we (people with dementia) have feelings, and we, not them, are diagnosed with a progressive terminal illness. Dementia is a progressive debilitating illness with little treatment, and no sign of a cure in sight. Robin Williams was living with a form of dementia that his family believes was a “key factor” leading to his suicide earlier this year, according to a report… it is obvious he felt a burden to his family long before he really needed any level of high care. I often feel like more of a burden because of what carers and others say or imply about people with dementia.
It often sounds like we should be the only ones who are grateful and they are the only ones with any difficulties or challenges. Very often, a carers comments, especially about being a burden…
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We all cry at some point in our lives. Either from the loss of a loved one, illness, accident, losing a job, weddings, birth of a child and even movies. Men and women. Adult and child. Good times and bad times. We all cry.
Some of us are able to control are crying much easier than others. Only sniffle a bit with a death or a new baby. Others cry over everything, good or bad. Neither is wrong. To cry is normal and expresses our feelings.
I remember the birth of my two kids. I cried tears of joy. I remember the death of my brother and my dad .. tears of unbearable pain. But in between, I pretty much held it together except in a crisis or accident. I tried to be the “tough” one and not show others any kind of weakness, regardless of the situation. I succeeded and failed here and there.
When I became ill, I think I was more in shock than actually ever feeling myself being brought to tears. Then my emotions shifted and then came the anger, the depression, the fight, the feeling of “being in and out of hospitals and poked and prodded” becoming my “normal way of living”. I still didn’t cry over the disease. I did cry here and there from frustration at times though. When things just got too much to handle, I guess.
I talk about the degrees of pain I’ve been through over the last five years and how I’ve coped, and not coped. I talk about the feelings inside my head more than any words I said out loud. I also talk about the hopelessness that seems to still hinder me daily.
Then came yesterday and today – tears, and a lot of them. The disease? I’m sure someone could say the tears are because of that. An emotion I can’t quite control as well as I used to when something happened so pronounced in my life, that it just grabbed me, took my breath away, and shook me to my core. I finally cannot just “tough” it out and not show others my pain.
You see, I’ve lost control over most aspects of my life as you know from my previous blogs. I’ve lost my independence and ability to work. These two things are what took me to a new place yesterday that I’m not sure I know how to get out of. Yes, I already lost those two things years ago, but the realization again of such important human traits, broke me yet again. I see no fixing this feeling this time.
You see, my husband and I always had a plan. Yes, life throws curve balls at you when you have plans and goals, but the end result is still there, and you just bend around the shots that are thrown at you. Well, our plan and goal has been changed and cannot be undone. I am at a loss and instead of the “old me” being able to be that optimistic person and look for a way around it, I am now a person who can’t see a positive outcome, no matter which way I look.
What little bit of hope that kept me going is gone now. Am I back where I was years ago with no reason to live? I truly can’t answer that right now.
Am I looking for attention or someone to change in order to help me – no not at all. Because that would be unfair and not what I’m truly made of – no matter how bad my disease is, I will never give up that trait.
But what do I do now? How can I even face another day knowing that this isn’t going away? I can’t answer either question. The disease? Definitely. Anger again – yep. I loathe this disease and what it’s done to me.
So, I’ve “escaped” again to my room, to sleep, to dreams and nightmares. Trying not to face reality or anyone in my life right now. I wish I could say it’s helping, but it’s not. That’s why I’m writing this now.
I’ve shut everyone out and I feel like I did 376 days ago when I lost my best friend, my dad. I’ve suffered another loss, but not by death this time. In this disease though it feels the same to me.
As I’m typing this, I honestly don’t even know if at the end I will be able to even publish this. In my first blog I mentioned how much of a private person I am and this blog (though without actually saying exactly what has happened) is much more raw than anything I’ve ever written before. It’s too personal, too much insight into my life and to show my vulnerability is very hard, if not impossible. So if you are reading this, I took that leap. Not for comments or for anyone to reach out to me, but just because I needed to share what I can’t handle right now.
I wish I had someone to ask, and even if I did, there’s really no answer to the question. No solution. No hope.
I don’t know what I’m going to do. I’ve probably already said that by now. But it’s still there – the unknown. The desperation and again, the hopelessness.
How can someone like me who is sick bounce back from this? Please don’t say from the help and support of my family and friends. They can’t help. Not from the size of this impact in my life. I can’t even be there for my husband as he’s trying to deal with this too. Another thing that’s breaking me apart from the inside. I can’t be strong enough for myself or for him anymore.
How do I end this blog? I don’t know that either. I’m truly heartbroken. I wish for so many things. I wish some things had never changed and I wish some things had never happened. I wish I still had a plan in place, a hopeful future to go where I need to be and to be happy once again. I don’t even know what it’s like to be “happy” anymore. I’m so sad and I’ve sacrificed so much already – I don’t have anything left. I know I couldn’t have given anymore than I had, and looking back, obviously none of what I did mattered anyways. If it did, things would be different.
I will pray again tonight as I did yesterday and all day today. I know God can move mountains and miracles happen everyday, but I feel that nothing will change this time.
What’s my direction? I don’t know. Hopefully tomorrow I will find it and be able to share it. If not, more “escaping” and just staying in the dark….
I’m not going to “sugar coat” this one.. I can’t – too personal and way too much of it has surrounded me recently that it has overtaken all of my thoughts – night and day.
Anger – yep, going with another word. Where to even begin with that one.
It’s gotten so tough reading and reaching out and having others reach back to me who have the same disease as I – – but not for the reason you may think. It’s because it’s heartbreaking to hear, that horrible feeling that I can’t help any of them, and an anger of hearing the lack of respect, help and understanding from others in their lives or from those they encounter.
I recently read an article written by a world renown doctor whose speciality is dealing with those with Alzheimer’s and Dementia. Her blog is followed by many, so this particular statement of hers was really heartbreaking for me to read: “But reasoning is an ineffective strategy when you are working with someone who is no longer capable of reasoning. To be frank, it doesn’t work to explain things to people with dementia. It’s not that they’re not smart. It’s that their brain is dying.” (FYI: There was much more to this particular article, but this part is what stuck out most to me)
First off I truly do learn a lot from this doctor’s articles and experiences and respect her greatly, but this one quote definitely put me off as an opinion of what an “expert” has to say regarding such a huge human issue and quality.
Explaining: First of all depending on what stage a person is in – this blunt quote could be a huge detriment for those with the disease. Just because we are diagnosed, doesn’t mean we are all in the same stage of reasoning. I reason quite well in certain areas and I’m in the beginning of stage 6 (there are 7 stages of Alzheimer’s). When others explain things to me – it’s not a waste of time or that I’m incapable of understanding (again, a quote from someone who observes, not from someone with the disease – a huge difference). I just have to process it differently than before. I may start a task, and yes, forget what I’m doing in the middle of it. I may be told how something works with my meds or procedures, and yes, I may forget some of what I was just told, but I still “know” what’s going on around me. Is it a “waste of time” – absolutely not. Is it a waste of time for those without a disease to explain something to someone who feels their “right” and you’re wrong? No, of course not. If we dont discuss situations with everyone regarding every subject known to man, then how can humankind ever get anywhere? Just because we are sick doesn’t make us any less of a person – we are still humans and a person with feelings and a soul.
I think if you are just going to give up on someone that is ill because you feel its a waste of time, then I’m scared to death for the majority of the world’s population with whatever disease, illness, stress, anxiety or a life changing event that they have. How would you feel if someone told you that you’re just not worth it anymore? Yes, tough subject, but if you don’t discuss it, then when I get worse, and/or others start showing signs of this disease, who will be there to help us? Put us all away in some institution because in your mind we can’t “reason” the way you think a human being should “reason”? Who makes you that person to decide what a person’s reasoning should be?
Yes, this post has a lot of anger and I know I shouldn’t be angry, but at some point when you continue to be a punching bag because of your illness, you have to speak up. I’m still here, in the flesh, with a working mind and body (even if some of it is bent and broken). And I’m not the only one out there.
Before you express such a personal statement about something that you do not physically deal with, think about what kind of impact that it can have on those with it, their family members and society as a whole. No wonder I’m surrounded by prejudicism daily. You don’t think that’s possible? Ask any of us. It happens more than you know.
My life revolves around a world filled with “stereotypes” and as we all fight for equality and individual rights – we forget about those who battle with an illness. We focus on those who are healthy, who have a bright future and the “what” that they will be able to contribute to this world. But you forget about the millions who are sick and are still in this world too, who should have the same exact rights.
Hmmmm – regardless of gender, age, race, creed, sex, lifestyle or illness! Equality involves all of us. Let’s start living it instead of just talking about it.
“There’s No Life That Isn’t Worth Living, There’s No Person That’s Not Needed”
“Every Life Has A Purpose”
I was reminded today by a memory of how life just keeps moving on.
We lost a dear friend recently and a cousin and father last year, but life kept going on. I know what it was like when my dad passed, and yes, I tend to repeat that fact in most of my blogs – I guess that tells you how much I was truly affected by it. But even though I lived through such a huge loss, it was easy to keep moving on with things in my world, mind and life as another person was suffering their own loss. I know none of us ever truly forget or mean to “ignore” the fact of it, but we still continue on with our work, kids, routines and personal stuff. As time goes by we forget even more about the “casualties” left behind from such events.
I know I was forgotten, as was my mom. It wasn’t out of any intentional harm or disregard, but it’s definitely a “rude awakening” when you realize how much you have continued on, when someone you know is dealing with the same thing you had dealt with.
I was told this past year I was suffering from PTSD from the loss of my dad. Never thought that word would mean the same thing as it’s used to describe one of our own brothers and/or sisters in the military returning home. I truly thought that was what PTSD was really about. But I guess I was wrong, according to some psych person along the way I routinely have to see due to my disease.
But I did reference the definition and this is what I came across: Post traumatic stress disorder (PTSD) may develop after a person is exposed to one or more traumatic events, such as sexual assault, warfare, serious injury, or threats of imminent death. The diagnosis may be given when a group of symptoms, such as disturbing recurring flashbacks, avoidance or numbing of memories of the event, and hyperarousal (fight or flight), continue for more than a month after the occurrence of a traumatic event. Most people having experienced a traumatizing event will not develop PTSD. People who experience assault-based trauma are more likely to develop PTSD, as opposed to people who experience non-assault based trauma such as witnessing trauma, accidents, and fire events. War veterans are commonly at risk for PTSD.
Hmmm – I definitely doubt I fit into that category. Yes, I experienced a traumatic event but I don’t have flashbacks or avoidance. I fit into the part of being in a “non-assault” based trauma. Then yesterday, one of my loved ones commented that they doubted PTSD defined me as well. They seen me a year ago as being in more of a “defense” mode. Facing the reality of the situation and dealing with it efficiently, organizing things to be done, making sure everyone else is ok and then finishing up the paperwork and such needs after the death of my loved one. They feel I truly never had time to grieve, even with the fact that everyone grieves differently. After they mentioned this to me I started thinking. Am I just dealing with it in “my own way” or is this something I needed to explore further.
Well, today, 2/2/15 – I guess I’m still dealing with it. Yes, I post pictures and write posts to remind myself of the loss I dealt with and to show the joy and love I had with my dad. But I do realize many others have experienced the same thing. I guess me putting it out there again is just reminding me of what a great dad I had and how much I miss him. I do the same thing on my brother’s birthday and the day he passed as well.
Is it right or wrong? I don’t think anyone can tell me either way specifically since we all do grieve differently. But today really made me think more about my friend who is now left behind and picking up the pieces.
How do I help? First of all, I’m in a different state now. Secondly, I’m too afraid to reach out too much and seem pushy. Thirdly, from my experience, at some point you want to be left alone to “deal with it”, but feeling at the same time, afraid of being left all by yourself.
I don’t want to ignore or forget. I don’t want to seem too pushy nor seem like I don’t care either. I just sit here thinking what can I do? Are there people close by for my friend to help her and get her through this the best way that they can? But eventually they will still go on living their own lives. It’s what we have to do to still survive. Go back to work, school or be a parent or a partner to someone else.
My thoughts are still with my friend now. Wishing I was closer to where she lives and able to relate what I can, that I understand what she’s going through.
Do we all tend to just turn away from the hurt and pain too? Easier to ignore and move on than to relive it everyday. For me, I walk past my dad’s room everyday. That involves memories of good times but also of the fact that he passed in “that” room not long ago.
I still don’t have any answers to any of my questions. I may never find the answers or a solution to make it easier. I just hope and pray that someone won’t forget my dear friend and be there for her as she settles back into a “normal” routine, whatever that looks like. I pray that someone will be there to listen and/or to just sit with and lend a shoulder to cry on, no matter what time of day.
Have I gotten over my personal experience – nope and I’m not sure I ever will. Time does not heal everything. I think we just keep building up deeper scars that heal, reopen, heal, and break our hearts again – over and over.
So my blog tonight is about “not forgetting” a friend or a loved one that is left behind to deal with grief and help them in trying to find that niche of a life they are now living alone.
I wish someone would have done it for me at some point in the last 368 days ….
When do you decide enough is enough? Is it consciously or circumstantial?
I guess for me it’s that point where you can’t even look at yourself in the mirror anymore. Not because of anything you did but because of what you’ve become from something you have no control over.
Is it aging I’m talking about? Not at all. I actually embrace aging as a gift, another chapter in life. It’s nothing I want to try and reverse or “buy” to look younger for some vanity reason. My gray hairs and wrinkles are my story. It’s the life I’ve lived and I have no regrets.
Nope. It’s looking at someone I don’t recognize anymore from a disease I can’t control, medication side effects and defeat penetrating from my eyes.
It’s the knowing that from a point in time moving forward that I could no longer say “I’m going to try this no matter what anyone says!” How can I? That’s where the loss kicks me back down to my knees. That’s where being broken stops me from standing back up. You think you just master the art of bending with each blow when something else steps in and causes you to crash.
You have to wonder and question can I overcome this? Can I live to fight another day? Sadly, this is a continuous cycle in my world now.
Recently my husband had a stroke. The man that has taken care of me through everything. The one who never left my side through each and every illness. He’s my rock and my strength. He broke. Where do I go now? What do I do now?
If you ask anyone with a terminal illness what is the hardest thing about it, the answer is mostly going to be, guilt, for those you love that have to deal with it. Not what you deal with, but what they deal with.
So somewhere between being loss and broken is when life literally lays you on your back and when you look to your side, there lays a family member right along side of you. Is it your fault? Of course not – well, reasonably. You can’t control what’s wrong with you, but if you weren’t sick, they wouldn’t be suffering too.
Now I have a husband sick and broken and along with that two adult children suffering too.
Yes, suffering. I’ve watched both of my children deal with this in two totally different ways – as they literally deal with things in completely different ways. No right or wrong there, just as each of us are different, are they as well. But they are suffering in different ways and its hitting me at a painful degree of breaking apart my heart.
I’m the mom. The one who is supposed to be their rock and strength. Their both way too young to deal with this let alone be their moms caregiver.
In the past year I’ve “lost” my kids. Their both here in my home several times a week, but not as my children but as my “employees”, taking care of me. Wow – that really sucks to actually put into words.
I’m blessed though. Neither of them blame me or feel that I’m at fault in any way. But the cracks in them I see more and more. They tend to only see me to take care of me. No dinner nights or game days. Just caregiving. Please don’t get me wrong. I do not blame them at all. How could I? I know what it takes. I took care of my father for 3 years in our home before he passed and dealt with being sick myself at the same time. It’s the most draining and emotional roller coaster ever. I do not regret one moment with my dad and would give anything to have him back with me again. But it was definitely hard and when caregiving, you tend to not take care of yourself either. That’s what I’m seeing in my kids and husband now. They worry about me so much that emotionally and physically they themselves are falling apart.
So back to loss and broken. That’s how I feel tonight. When is enough, enough? How can you change it when there’s no cure and no easy solution.
Fighting back is good, but they still suffer. Do you cut them out completely? Can you cut them out completely? It’s not an easy answer nor do I believe there is a right answer. I need them and of course want them in my life. They also need me and want me in their life too. So what do you do? That’s where I’m at this evening. Trying to figure out the correct way and the best way to move forward.
I’m not getting any better and they all have their lives ahead of them to live.
I then sit back and laugh at myself because of some stupid and random feeling I have at the moment over a football game. When there are much more pressing issues to tackle and in need of focusing on.
Life? Reality! It sure does suck at times.