I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is based upon the poem Sheri wrote and posted about under the Feeling Sad for DH thread.
The poem so eloquently captured the other perspective - that of the person with the disease - that it was a huge wake up call to me. Please read the blog and let me know if it affected you the same or differently than it did me. Thank you.
I've appreciated and admired Sheri's writings since I've been here. This poem too is poignant and bittersweet.
The verse "I search your face for a familiar place" hit me the hardest as it intensifies my guilt. I didn't question or criticize my husband mostly because I was afraid of his reaction. Following the months of constant rage I behaviorally trained myself not to.
But during the last year he was home and certainly during the final months I found myself distancing from him in terms of physical contact, time spent and especially emotionally. I swear his eyes changed color. They certainly became different, filled with, I don't even know a word to describe it but empty of the sparkle, humor and intelligence they once held.
About a week before he left (home, not a week before his death), I was giving him meds and he looked at me with what I would call a look of wonderment, maybe even love. I just couldn't take it, I looked away; I did not have the emotional strength to meet his gaze.
I could not look my own husband in the face. So much had been lost and I was so scared, not of him but my own feelings. I am so ashamed of myself and so wish that I had that small piece of time to do over.
I thought the poem was wonderful too...and it is good to stop and remember the other side of this horrible disease. But we also should not beat ourselves up when we don't quite have that at the front and center of our lives as this f&*^E&WT disease beats the hell out of us too, sometimes to the point that we too are lost..How can two lost people, though in different ways, lead one another safely through this forest without the occasional wrong turn?
The question is, Joan, how do we keep the focus on the suffering of the person with dementia? Post Sheri's poem on our refrigerators? At one time or another, we all have lost sight of it (to varying degrees) because we were so overwhelmed with our role.
Yes, Marilyn, I too wonder how we keep the focus on their suffering. I am often so exhuasted and overwhelmed, and to be honest, so %$^&*@ tired of doing it all, that it is hard to remember how much he is hurting. How lost he is. Maybe it's not such a bad idea to post the poem on the refrigerator.
Hi ladies, I welcome the conversation about the poem, is just a moment in time from my head, about what it must be like for them, no one should ever beat themselves up for this wretched place we are in. We all have times that we just can't deal with it. Myself included. The lonlienss, know one to talk to and lack of relationship pushes me to the breaking point. Pleae don't think it was written with the intent to make us feel worse than we do, I would never what that to happen.
It was a wonderful poem, Sherizeee, and much appreciated. And, no, we know you didn't write it with the intention of making all of us feel worse than we already do. Thank you.
Sheri - I'm always so impressed by your feeling for your spouse. I'm ashamed to say I think of myself and poor me too often. I must have been one selfish wife before and never realized how much he did for me and for our relationship. Was he doing all the giving and now I'm faced with my doing all the giving. Thanks for your poem and the thinking it has made me do.
Sheri, I know that you didn't write that poem to make us feel bad. I'm sure that you were just inspired to write it in one of those times when it hit you how he must feel. I know that when I am in one of those “poor me” moods, when I read your poem it snaps me out of it. Or when I sit across the room from him & he has that sad blank look on his face, I can't help but feel “poor him.” Thanks for sharing!
Sheri, it is a beautiful poem and I know, as do many others, why you wrote it. We should never forget while our life has changed as caregivers, it could never compare to what our loved ones are experiencing. Just look into their eyes. If reading the poem gives some spouses a pause to reflect on their feelings, then the words written by you have been very effective. We all can become better people on this journey...do not let this monster disease do anything but make us stronger. Keep up the good work and words.
Sheri, your poem was poignant and brings all the emotions we feel about how we feel - its important to focus that both caregiver and afficted are suffering. thank you for sharing divvi
As I stated, obviously I was not able to do that. I've said that I am sorry to my husband, to myself, and to God.
Okay, I will say it to you as well.
Sorry, sorry, sorry that I am a spouse who is not perfect and who needs to "reflect" on my feelings. Which, I can assure you I have done. I have done more than reflect. I atone. Too bad I cannot atone to the one who really matters.
Hi, My name is Val. I've been reading you all for awhile but reluctant to chat. I think I have something that might help us all with realizing how difficult it is for them (and us). My husband was diagnosed with Younger Onset 4 years ago. It took almost 7 years to get a diagnosis. He was in his mid-fifites when it all started. My husband had to retire early. He was a CEO of a non-profit and had been for over twenty years. It just became more and more difficult. I asked him once, earlier on, what it felt like inside of his mind. Here's his answer with a little twist from me to help people better understand. Close your eyes. Imagine that you see dozens of little people smaller than the "Keebler" elves in your mind. They're running around with papers, pencils, clipboards, laptops, you name it. It's utter chaos. Someone asks you a question and you're waiting for an answer to come. Everyone is sending things and you find that by the time you get an answer, you realize upon noticing the other person's face that it is not a viable answer. Open your eyes. This is similar to how an Alzheimer's sufferer feels. This really helped me put things in prospective when I'm getting impatient. I hope it helps someone else too. Love Sheri's poem. Val
Hello folks The poem was great But when one is fried from care giving 24/7 No poem makes me feel better I am pissed at my hubby and the world I pour my self a good stiff drink And coast Until respite care time. Which I book every 5 weeks Here my crazy canuck corner It is two weeks I pay $500 and hubby goes there for 2 weeks sometimes 3 week Until I can once get a handle on this life The gods have seen fit to bring to me and my hubby This a great earth school But it is tough And This2willpass
Wow, Val! I realize my spouse has great difficulties with what's in his mind because I can see him sitting or lying down, not doing anything but looking as though his mind is very busy. When I ask him why he isn't doing anything, just lying there, he says he's "thinking." Several times, while he's doing that, he'll ask me a question about someone, or something, in our family - like he's putting it away somewhere in a file. I think he repeats things over and over in his head, thinking he can remember better if he keeps going over the names, etc. He asks such odd questions (to me they're odd, not to him, of course) that it shocks me each times he asks whether we're living in our own house and where did we live before, and which grandchild belongs to which daughter. They shock me, because it will seem that things are going ok, and out of the blue, I'll get a question like that, which makes me see all over again that all is not right with his world. Or mine.
Val Bev, it seems that there's no rhyme or reason with this disease. Some days I'll think, they must have made a mistake and within the blink of an eye, I'm shown otherwise. It's such a rollercoaster ride. I feel like Taffy being pulled in all directions. Hang in there.