For those of you that we don't see too often, just want to let you know you are being thought of. There are lots I just cannot remember all the names. Hoping for some smiles in your day.
This could be long-but first of all, thank you for asking about me!
Oh-When my husband died I was shocked, then actually relieved. The last months, especially since this calendar year, were so difficult.
I rememember, Coco, when you and I shared reflections of Glen Campbell on a show and how we each said, essentially, "you know AD in their eyes when you see it". So, I saw my post about that and was amazed that husband and I enjoyed a tv show together- maybe February?
The hospital, the rehab, the alf, the hospice, the unexpected sudden death. I was relieved his suffering was over. Not so much relieved about how he died, although it was with hospice care. Just relieved his suffering was over. He did not believe in a deity or afterlife, but I do.
So, there was a time when I was "getting things done". I want desparately to move and thought I was doing reasonably well clearing out things, considering the heat.
I was inspired by Bama, it seems she was ready to move within a few months.
Then, late in August I began a health scare of my own.
Now I am consumed with that. Far too similar to what my husband encountered, "you are too young for this" and referrals to neurologists and rheumatologists. I fear it will be more of the same ******* **** that he dealt with.
I am on a short term "steriod blast", hah, short term means nada to me. I am exercising like crazy, taking supplements by the fistful and starting Dr. Weil's anti inflammatory diet.
None of this means I can sleep. None of this means I can reconcile with the fact that my husband died very angry with me. Angry about the hospital, angry about rehab, angry about alf, angry that he could no longer read, write, think, swallow, walk, have control of his bladder or bowels. Angry that he was in a wheelchair and an alarm would go off when he tried to stand.
He blames me for all of this, for not delivering him from this life. Instead, he feels I prolonged it. How can I say I am sorry to him and to God?
You have had to much on your shoulders and I wish I had the words to make it better. You did nothing wrong. It was the AD that made your DH angry with you. It was not your DH.
And I am so sorry you are having problems yourself. I pray you can overcome this. I wish so much that you can find peace and start to heal.
Abby...Abby....My heart breaks for you. It was NOT you or him that caused this condition or the worsening of the condition or the death of your dh from the condition. It was and is a higher prower that sets the date and time that one must leave this earth. At least that is what I think and I think you may believe that also.
There are so many things, big and little, that our spouses do that may or may not be what they would do if they didn't have AD. It sounds like your dh was in the mode where the AD had taken over his logical reasoning. Of course, you were not at fault in any shape or form for what happened. You did what you had to do. That is the best anyone can do. Please don't beat yourself up even considering you were at fault.
You must now take care of yourself. You are #1. Hope you get some peace and get to feeling better.
Abby, YOU believe in a deity so you must know that there was a plan for his life. You had no control over that plan so there should be no guilty feelings on your part. God was and is in control so really believe that and move on with your life. I thank God every day for another day to enjoy this beautiful world he made for us. Yes, I did pack up and move and it was not easy. My house sold and I only had 3 weeks to move. When I contacted Live Oak they did not have a vacancy and I did not know where I was going to live. They worked out a plan for me to move into a townhouse on a month to month lease. An opening came up and I was packing and moving again. That was hard on an ole lady but you have to do what you have to do. I have been in my new very small villa for about two weeks and it feels right. Maybe all the changes were good for me and I didn't have time to feel and worry about being lonesome and alone. It might not work for everybody but moving was the right thing for me. So sweet girl really believe you did the best you could with the cards life gave you and banish the word guilt from your vocabulary. Now...that's an order.
Abby I am so very sorry you are having health issues. You are in my deepest prayers today. Thank your for sharing your heart, and please heed what others have said here.
Abby, I am so sad to hear about your health problems. As others have said, try to put your regrets about your husband aside and focus on your getting well. Easier said than done, I know, but we all only have one life to live. Please stay in touch--you know we are all rooting for you.
My belief in the deity became more stong when my best friend died in 2003 and has become stronger with my husband's death.
I don't know how to explain either.
Your comments are wonderful and affirming. It is my pattern to avoid but with this support system I realize I don't have to. I may need to learn that lesson again and again.
It is my belief that for the 18mos-2years that my husband was essentially housebound I used adrenline to push through. I knew I could not accommodate being ill- who would care for him and who could possibly care for me.
Just in passing, I once asked a psych friend " why are so few weddings cancelled, why do so few brides get sick?" She said "it's the adrenaline"; it keeps them going to post honeymoon; then often the crash".
And I have come to believe that my adrenaline pushed through. Then there was the shock and then the relief.
My medical problems are immune related which makes sense. Not in a way that I can medically elaborate, but in a way that makes sense to me. Crisis has a reaction, so does stress, so does grief, and then what does the body do when it senses that is over?
I am now doing much of what I did for my husband. Consults, test, etc; the medical mysteries : "this is atypical". Yeah. I've heard that before!
abby--others here have experienced what you did--sudden onset of various conditions after their LO passed. Perhaps they'll see this thread and post. I agree that adrenaline gets us through, but our bodies can only withstand so much stress. Eventually, there have to be repercussions.
This job we do each day caring endlessly for our lo most definitely takes it's toll on all of us whether we know it or not. One person just isn't equipped to take on all that we have to in order to care for our lo. My goodness, first you totally lose the man/woman you married and have known for years and years. You no longer have a partner in ANYTHING, just you doing EVERYTHING and then some more for an ungrateful stranger (almost) that we used to love and feel the obligation and commitment to care for to the best of our abilities to death do us part. Yes, the adrenaline carries us along for a long, long time, and, then out of nowhere, we're knocked down by something that almost kills us (in my case, Sepsis) because our immune systems are really run down. I can't imagine living the way I do for many more years with a man who continues to decline and becomes more and more possessive and dependant. And, at the same time, I can't imagine living without him. Too many conflicts, no wonder we get sick.
I have been amazed at what good health I have had- a knee problem because dear Mother believed no ballet can be enough.
Other than that I have been congratulating myself. I am doing the same things, yoga, cycling, supplements, not much walking because of the knee... meditation, etc.
But now I may have PMR?! Okay, maybe the only other thing is that you could call me "cupcake". Yes, a few pounds have come home over the last couple of months.
I've started Dr. Weil's anti inflammatory diet. Okay, I still have to have my morning croissant and coffee and can't give up vodka.
I know, Marilyn you are not bereaved, but his has happened to others? Suddenly?
A neighbor said,"how did you keep going for all this time" Now I wonder!
abby*, I'm glad to see you posting. I have been thinking about you. I have a question & if it's NOMB just tell me. If I remember correctly your parents were trying to get you to leave your DH because they didn't think he really had AZ. How are they towards you know that he is gone? ((HUGS)) to you.
abby--I seem to remember several people here who posted about that issue. It was several years ago before you started posting--maybe Divvi will remember. If you put your email address in the contact thread, I'll tell you about my experience.
abby, I have rheumatoid arthritis and have had it almost 40 years. When it started at 21 all the doctors told me I couldn't have it because I was too young. I had one orthopaedic dr tell me it was in my head...nothing was wrong with me.
Keep on the drs to give you a "good" diagnosis-don't let them dismiss you. You need to know what is wrong and what can be done. And yes unrelenting stress over a long period of time can cause many illnesses. You are in my thoughts.
On another topic, how did you make out with the medical bills? Feel free to email me.
Marilyn suggested I tell my story to you... My DH died in November. The following February, I woke up one morning and discovered one of my eyelids would not open. My face felt strange, (not numb)..just strange. I went to my Internist, who immediately referred me to a neurologist. I had several MRI's., and the neurologist brought me in and explained he saw a large white lesion in the optical region of the brain and he needed to run one more MRI with a different contrast. He was bringing in a specialist from M.D. Anderson to review the tests. Went as far as to explain the next step would entail them cutting a section from my skull, go in and investigate the lesion and take biopsies, etc if he confirmed the lesion was, indeed, a tumor of sorts. I was now feeling "NUMB, STRANGE and Scared Sh**less." The tests were run and the specialist determined it was NOT a tumor, but probably something that I was born with!!! No problem. With that information, the Neurologist could only guess that I had suffered a small stroke. My eyelid was gradually coming back to life and it was not only closed halfway. It was April before it was completely open again. I do believe women, in particular, have the ability to 'hold it in', during bad times... and many times, we just keep going. No one knows for sure what really caused my eyelid to close shut..but the stroke theory is the only one we have to go on.
I slipped in water from a melted ice cube that had dropped out of the ice dispenser unnoticed... and I fell really hard, on the kitchen tile floor back in September prior to all of this., My feet went up and I landed on my head first coming down. I suffered a concussion above my left eyebrow up to my hairline. I had the ugliest bruised face for almost 3 weeks. The doctors the following February were wondering if my eye situation could be related to this... but apparently it was not. (It was on the same side, however!) I just believe that God kept me going until I didn't have to take care of DH any longer. Foster was my dearest love, and I cared for him alone, no family help, for two years before he passed away. I managed, as we all have. With exception of the concussion, I did not experience a single day of illness during the days my DH needed me the most the last two years.
Go figure! The year after he died, I suffered miserable allergies, was diagnosed with mild diabetes, and a thyroid condition.
Sound familiar?? Praise be to God, I'm glued back together and feeling fine now. Stress can be a real killer. Take care of yourselves as much as you can!! I really do understand exactly what each and every one of you are going through. Heartache cannot be healed with a pill, can it?
I added email to my profile. Sorry, Marilyn, I didn't do it in the contact thread, and LFL, I emailed you a couple of weeks ago but think I had your name "off" by a letter.
Nancy B- I have slipped on those ice cubes too. When they pop like that I try to remember to throw them to the cats who generally get a kick out of chasing them around.
To all who posted. Just like with H's FTD, I did not expect this. At my best, I thought that I have fought the good fight, now there is relief. To be honest, there has been some relief in that I am no longer afraid. As I have posted before, I now awake (but don't sleep really well despite ambien) without fear of slamming, banging, ideations of going somewhere, screaming, etc.
So, I am no longer afraid of him but am now afraid of my own body? I took care of him, don't eat meat, am newly doing the anti-inflammaory diet. Always yoga, always aerobics as my knee permits.
Elaine H- thank you and no I don't mind answering at all! My parents never really cared much about me and cared even less about my husband. Their reference was the coach at Vanderbilt because Father goes there for treatment for his brain cancer.
Say what they did about my husband, he was not lazy and would never have chosen not to work. Losing his career was something that I believe greatly contributed to the progression of FTD.
As a PS about my parents: they are currently upset with me because I am not willing to travel some distance to date a newly divorced neurosurgeon who could likely "set me straight" on my husband's failings. This is because they are "looking out for my best interests". I try to laugh.