DH was grilling steaks on grill last night (something he has begun to struggle more with...cooking) and one of our dogs wanted to go outside to sit with our son, Joel, on the grass while he texted on his phone. DH opens screen door and says, 'Go outside with....with...with...uh...' and I finally said, 'Joel'. The feeling I got was like a lead cannonball being thrown at my gut. He's been at this so-so stage for a couple of years now...I keep hanging on to that, thinking he'll be like this for a long, long time. I know he won't. It hurts too much to think about the future. Somewhere deep down inside, I want to believe that all this is wrong.
It really hurts when they forget your name. I couldn't believe it the first time Bill forgot who I was. At the time we were taking our morning walk and he seemed confused. I ask if he knew who I was and he got upset and said "Do you really think I don't know my own mother?" That ended our walk because I was so upset. It's gone on long enough now that it doesn't bother me as much. Bill doesn't know any of our children or grandchildren or that he was ever married. I'm just happy now when he recognizes me as someone he knows and likes. Even though he doesn't know who I am.
I wish I could wake up and find out this whole thing was just a horrible nightmare. That always happens on tv, why can't it happen in real life:
I am so sorry Medic, those "firsts" are always so hard. But take heart that in the next moment he will again know your son. And I truly believe that even if they do not remember our names or what the association is to them, they will always recongnize our love of them and our gentle touch. I can watch JR's eyes and even as he asks me when I will be home, when I speak to him I see the "light" in his eyes and a softness that has always been there for me. I know how much he still needs me and loves me by the touch and warmness of his voice. Hang on to all your memories, AD can rob our loved ones but it cannot take away our memories. Thi nking of you and your family Kathy
Kathy, I hope you are right in that this disease cannot take away our memories. I find that I can no longer remember how Jim was before this horrible disease took hold of our lives. 8 years in this and I for the life of me cannot remember how it was before
Jane, I know exactly what you are saying....I have felt this way for so long....I can't remember what life was like before...I know he worked and we went out and vacationed and had fun with friends and family, but it just seems like it was a lifetime ago. I am hoping that I can remember something besides him lying in his hospital bed and looking so different.
I understand what both of you are saying, our daughter says the same thing, but I told her the good stuff will come back, it may take awhile but they will, I try to talk about all the fun things we used to do as a family to keep her"dad" alive for her. I have always said to both our children that their "dad" would not say or do some of the things JR does now to really try to make them see that it is the AD that makes him say and do some of the things that are totaly out of character for him. Kathy
my dh could not name our 2 daughter's today. i am always with him,but i was shocked. i just don't ask him these questions and assume he still knows. our son was the only one he could name. speaking of this i want to tell all of you new comers,don't wait too lat about going to a lawyer and get your affairs in order. the lawyer or someone in his office will have to talk to your loved one to make sure they know they are giving you power of attorney,etc. that's when the lawer came out and called me back and told me dh could not name any of our children but our son. this devastated me,but i talked to the lawyer about a estate planner computer program that i have and he said as long as i have the proper number of witnesses and notery public. i will be able to do what i need to do that way. i have waited to late to go through an attorney..please take everyone's advice on this site and do it now. they know what they are talking about. i knew it ,but i was so wrapped up in my grief and worried about upsetting dh that i didn't do it when it needed to be done,that was when first diagnoised. i am in such pain now. it's not the will,power of attorney,living will, things. it's the forgetting of our daughters' names. i am so scared,now i wonder how many others he actually doesn't remember. this is just going way to fast. needless to say,when we got home,i almost went into a panic,so i had to take a nerve pill. i am in so much pain and agony,and knowing it is just going to get worse.................................................jav
And after you get all those papers done, while you LO can still sign his/her name, there are a bunch of others you need to do. Get HIPPA documents from Medicare, your insurance company, where you get your prescription drugs if it isn't a local drug store (just did that one), the bank if there are any accounts that are not in both names (that one is going to be impossible for me to do), etc.
Do the lawyer thing first and then work your way throught the rest of them. Some places will just accept your POA, others want their own document.
Just the other day, I realized how recently we took some really big trips, and he was fine with it. Knew where we were every minute, etc. When you remember those things, that makes you realize even more how far down they've gone and how quickly. maybe it's a gift not to remember too well at this time, Just so we can survive. On another subject, I had the lawyer stuff done last year (not soon enought, but OK), i am not familiar with Hippa documents from medicare and Insurance. what is Hippa? thanks
HIPAA is the Health Insurance Portability and Accountability Act. One thing it does is prevent insurance companies from giving your medical information to someone else without your permission. There are forms to fill out giving permission, so your husband can sign authorizing Medicare and your insurance company to give you information about him. I just looked up Medicare and our insurance company, and the forms are on line.
The form for our insurance company says that a new form must be filed every three years. How do we do that if our spouses become less able to sign? I'll call the insurance company and ask, but does anyone already know? Jane?
Don't tell anybody-but I've never had trouble with HIPPA. Everyone local would much rather deal with me than spouse. I do as much on line as possible. I do have DPOA
All the firsts are a big wrench or kick in the gut. We get thinking that they are okay the way they are and then they slip and do something new or forget something else. Take the time to grieve and then figure out how you can help him. I used to make sure that I said someone's name several times in the first few minutes of conversation and that helped him a lot.
I remember calling his ex-wife (we are friends) hysterically one night because I couldn't remember how he was before the disease struck. She helped me remember. But you will get it back after he dies, I promise. It's almost too much sometimes.
Wow. Is that for real? Do you promise that I'll remember all the good stuff over all the good years at some point? We've fallen so far apart since a couple of years before dx that I'm only here now because I know intellectually that we were happy for a long time and I made promises that I intend to keep. But just like they say you can't remember the pain of childbirth, I can't remember the joys and thrills of being happily married. I know we were happy and best friends, but it's been so long since I've felt anything more than pity that I can't bring those feeling back into my heart even when I try. It's all just gone. I try, but there seems to be nothing. And it makes me feel so guilty. He was always a good guy. A nice guy. I always felt so lucky. Then it all seemed to just slip away. I never hated him, but I sure stopped loving him - all the way to a point of nothingness. My life just feels like it's always been empty.
I felt exactly like that for years. I think it must be a survival mechanism. Think how hard it would be to have "how it used to be" right in front of you all the time, taunting you. Now that my husband has died, the memories are so intense that they hurt. But I'm grateful to have him back all the same.
Liz, I didn't have all the good years that you did, but I could have written your post. My husband too was a good guy, a nice guy, we were happy for a few years. But it came fast after that. I can't say that I've made promises that I intend to keep. I want to survive all this, and if my survival is at stake, well, I can't keep the promises I made before the unbelievable, unimaginable appeared. I am just trying to stay positive & keep my head above water.
The guilt and the emptiness are so huge. I look around and know that my children, my life history, my home and the mementos we have are a result of good times and closeness. The photo albums show smiles and adventures - my journals are proof that we survived some scary times that made us cling together for survival. But those photo albums and journals are almost like history books from school. Clearly, they must have happened, but how could I have been so a part of them if I can't remember or feel them anymore? I talk myself into that "for better or worse, in sickness..." promise because I have the proof that there were truly good years with this man. But I feel like an outsider reading someone else's personal narrative and I can't find that person who took the pictures or wrote the entries because somehow, she's not there anymore. .......maybe in some way, this is a little bit like what our loved ones go through??? Or not? I guess I shouldn't presume too much. I just don't have answers, but I'm grateful for this string to let this surface for a bit.
Why can't this dreaded disease be like the commercials on T.V.....which I hate, where they find out the husband has Alzheimer's, he is prescribed Aricept & everything is lovely again. NOT!
My husband seemed fine before he was hospitalized now he does not remember our daughters or what he did 10 minutes before . The girls say they are ok and they understand but how can that be ? my heart breaks everytime I see his face and realize he hasn"t a clue who he"s talking to. He has a great since of humor and no one has any idea he doesn"t know them. but I do . He looks at me with sad eyes and questions who they are?