I know you all so well. I have been haunting this site for a year or so, reading your posts, and trying to understand this disease. My wonderful DH for was dx'ed in 2013 at age 58. CT scan, then MRI and dx of dementia, probably Alz. Brain shrinkage. The radiologist noted that his brain was aging faster than most but overall reassuring. Reassuring??? He was having trouble talking, twitching left arm, having small car accidents, leaving the car door open when he parked, leaving the front door of the house open, if he did shut the door he would lock himself out. Couldn't use his cell phone very well anymore. ATM's were now a mystery to him. He would leave his wallet at various stores around town and luckily we would always get them back intact. Writing was impossible. Couldn't use a Kindle. An avid backpacker, it was heartbreaking to watch him put up a newer tent wrong. The decline started to show in the summer of 2012 but I was in denial. It took 2 coworkers of mine to separately ask me if something was wrong with him.
Cut to the chase...I work full time and after an incident in November when he wanted me to take him to see his wife who apparently was not me anymore (oh well, whats 43 years together), not sleeping at night, not being able to take care of himself while I was at work, I placed him in a 14 resident care home for dementia victims. We think he started having silent seizures (passing out) which I mistook at home for falling asleep at the table or wherever. March 28 a grand mal seizure at the NH. Trip to ER for 3 hours then released with dilantin and by Wednesday April 1 he was sleeping more then went into a probable coma on April 2. Started on hospice the 2nd. The hospice nurse arrived in the morning and told me he would be gone by the weekend. What?? The NH staff were wonderful and really liked DH even when he was naughty. He was so darn handsome. Stayed with him off and on until 8 pm Easter Sunday night and told him stories about us,I made promises, told him I had taken all his worries and finally told him he could go. Got the call at 12:10 am Monday morning that he had just died. Was able to get there quickly and snipped some hair and touched his hand and kissed him and said goodbye to now deaf ears. The past 2 weeks have been stunning and I try to not blame myself and I just can't believe the power of this disease. Had prepared for a long siege..my sister wanted to give me money assuming this would be a number of years not a number of months. Anyway, that is my story. I just am numb. No one should have to go through this awful disease. I salute all of you on this website for doing the best you can to help your spouse and yourself.
Oh my gosh. So fast. I feel so sad for you. Then again, as you know from reading on this site, there are so many of us are going on 10'years or more living with this horrible disease. Which is worse? They're both awful.
Keely, I am very sorry for your loss. I think most of us go through the denial stage when ALZ symptoms first appear. You went on such a whirlwind journey. I hope your numbness goes away soon and that you will be able to remember the good times in your marriage. ALZ is such a cruel disease. Just know that you did your best for him. All caregivers deserve happiness and I hope you will find some as you work through the grief of losing him.
Keely, I am so sorry this all happened so fast. My DH was dx at 58 and gone in less than four years. EOAD seems to move so fast in some people. All I can do is send (((Hugs))). I hope you find peace in your heart. You have been through so much in such a short time.
Oh Keely, what a story. I give you full credit for maintaining any sanity at all. You've probably heard it before, but it's so true: The love that you and your husband had for each other will get you through this. Stay in touch and let us know how you are doing. My thoughts and prayers are with you…so sorry for your loss.
Thank you for sharing your touching story. I am so sorry for your great loss. One redeeming factor is that you did not have to watch your husband suffer through a long tormenting illness. I am sending my sincere sympathy and prayers to you. Hopefully you will find some peace in the days ahead.
Keely, you have my thoughts and prayers, and hope you will find peace in the days ahead. Please take comfort in the fact that your love was known and felt by him and his love will be with you always.
Thank you all for your comments and prayers. As Blue mentioned EOAD seems to go fast for some people and I really was not prepared for that. Thought this would be a longer duration. I used to go to the post office or the grocery store and mumble a hello to people I would pass if I felt like it. Being humbled by this horrible disease, I really have become a nicer person...I see other people and wonder what they are dealing with and I hope my hellos and smiles are more genuine. How many people do I pass during the day that are dealing with something so horrendous like this or other problems. Last Fall I read Bob Bell's book "Un Moving Four Ward" about being paralyzed at 18. As Bob said, when you think "why me" you really should be thinking "why not me".
Indeed Keely. My sincere condolences to you. I've just listened to your song by the Allman Brothers. I remember 1972 like it was yesterday and I agree with you about that word genuine. It just keeps coming up. I'm sorry for your loss.
Thanks Wolf for your thoughts and posting the link to Blue Sky. That is a 4 kleenex song for me right now but also makes me smile. Never saw them in concert. Must do that in my next life. 1972 was a good year. 43 years ago??? Really?
Keely, you have my heartfelt sympathy. Your story is similar in some ways to mine. My DH was diagnosed in 2012 at age 62 and he is already in the end stage. He suffered a grand mal seizure on March 1st that has really sent him on a downward spiral. He is now in a wheelchair and cannot speak or do much of anything - he is pretty much sleeping most of the day. There are others here, like Blue, who have experienced the very fast ravaging of this disease. I wish I knew why some EOAD patients have such a quick decline and others very slow...........like so much with this disease, there are no answers. Please take care of yourself.
Your story is heartbreaking. I am so sorry for the loss of your beloved husband. The recent loss of my husband has also made me a nicer person - more understanding and tolerant. And I can relate to you trying not to blame yourself even though you clearly were a wonderful wife and caregiver. Just today I found myself blaming myself again for my husband's disease and death.
nbgirl, Thank you for your comments. I did not expect the seizures, or at least the last grand mal since the others were speculative. I am so sorry that you and your DH are going through this now. This is a bewildering disease. And it sets it's own timetable.
I live in a city of about 13,000 and a county of about 26,000 in Oregon. Last night's newspaper carried an obit of a 62 year old man who I recognized from town but we didn't know him. The obit mentioned he enjoyed his morning coffee routine with friends right up to the time he became acutely ill. The speed of this disease again for some of its victims but not all. Just horrible, horrible, horrible.
Joni, I think working thru the survivors guilt and questioning your decisions is the hardest part. A coworker lost her 64 year old husband in October after a 1 month illness. He had pneumonia. I still don't know how she got thru watching everything happen so quickly. Six months later she is still angry and told me she threw her cell phone in a fit of anger and broke it. She has questioned her decisions on life support, etc. You can just make yourself sick about it all. Should I have done this or that or the other?? We need to hope that time will help heal. And tell ourselves that we did the best we could.