I am in the process of writing a novel about the way Alzheimer's affects the entire family and not just the patient. However, many responses I have received in from those trying to assist are from people such as grandchildren of the patient. I would appreciate hearing stories from anyone whose has personally had to watch a parent go through the disease, especially if you were the caregiver.
I know these stories are intensely personal, so please believe me when I say that I appreciate every word! If you prefer, you can contact me directly to comment.
I was the caregiver for my Mom for about a year and a half, and before that, I saw my brothers in the same role as caregiver for years.
You're right, it's intensely personal, and there's a stigma attached to it, people are naturally scared of it! Especially younger people who don't understand/can't relate to it. But I believe more and more people are learning just how common this condition is and are trying to deal with it better.
I don't know where to start, really. A God-fearing, hard-working, intelligent, honest, loving, woman who had raised 7 kids and cared for her aging husband during his last years........seemingly changed into a stranger who didn't even know her own children nor remember much about her late husband. I think grief over my Dad's death and her loneliness after that had some effect on Mom's memory, I really do. But then, I also realize from all evidence that it's simply the aging process that causes Alzheimers.
This disease takes prisoners and holds them captive; it picks people randomly and has no mercy.
But I will tell you this--------it doesn't change a person's soul. My Mom may have forgotten who I was, but she never forgot our God! He held onto her, and she held onto Him, and so what I watched during those years was a miracle of Faith, really. That is, when I had time and energy to even recognize it. Because caring for someone in that condition will wear you down and drain you of mental and emotional and physical strength if you don't have someone else to help you.
I could say a lot about this. I'll try to contact you personally when I get some time..............
Thank you so much! I know it is hard to talk about, but I appreciate it more than you know. Are we allowed to give out email addresses in here?
If you have allowed contacting you, it's on your profile for anyone. Or at least an address through HP that will get to you.
I just now e-mailed you via Hubpages about this.
Feel free to reply and ask questions of me.
This is a worthy cause, to bring this disease even further into the light for the understanding and comfort of both the person who has Alzheimers, those who care about them, and the general population overall. As I said in my e-mail, I think Alzheimers for the most part is simply one of the results of aging, so I'm not really hopeful for a "cure" of it, but there are some people who develop it at much younger ages too.
I don't even mind if you wanna ask questions here in this thread too. A lot more people than is realized go through this, and it's good, like I said, to talk about this. If a question or situation gets too personal for public discussion, we can always use the privacy of e-mail to discuss that.
Thank you. I greatly appreciate it. I received your message, but I will go ahead and post my questions here in case anyone else might be willing to answer as well. I know you say you don't hold much hope for a cure, but I would hope to be able to help raise some funds for a cure though sales of this novel.
I am writing a novel about how the family of an Alzheimer’s patient is affected by the disease for the purpose of publication. My aim is to write a compelling work of fiction that paints a complete picture of what it is like for a family to suffer through Alzheimer’s because although the patient is the one diagnosed with the illness, the entire family goes through it as well.
I understand that reliving these experiences can be quite painful, but I appreciate your assistance very much. Your names will not be used or mentioned in anyway. Please answer any questions you can as candidly as you can. Be as descriptive as possible. I want to know the honest emotions behind your words. They will be used to inspire the reactions and emotions of the characters in my novel. Your words, ideas, experiences, etc. might also be paraphrased as they inspire me. However, I will not plagiarize your words, nor will I use your names in any way.
If this novel is accepted to be published, I want some or all of my proceeds to go toward research for a cure. To that end, if anyone becomes interested in knowing the true stories behind my inspiration, I will first get written consent before sharing your information with anyone else. Thank you for your willingness to assist me.
Children of parents that either are suffering or have suffered from Alzheimer’s please answer the following questions:
1. Did you know much about Alzheimer’s disease before your loved one was diagnosed?
2. From the time of diagnosis, how long did your loved one live with the disease?
3. How was your loved one diagnosed? Did something happen to make you take him or her to the doctor or was it found in a routine checkup?
4. Were other relationships within the family affected—i.e. did siblings fight over care or with each other or with the other parent?
5. What were your care options, and how did you decide on the course of action you took?
6. What was it like to watch your loved one go through the process? How did your thoughts and feelings toward your loved one and the disease change along the way? At certain points did you feel fear, anger, guilt, depression, etc? Why?
7. How did you react to your loved ones reactions to what was happening to him or her?
8. Was there any point in time when you felt like there was no point in visiting your loved one anymore?
9. When did you first realize something was wrong? And looking back, were there incidents that occurred that could have been signs you just didn’t recognize at the time?
10. If you are a Christian, how did this experience change your relationship with God? Were there moments of doubt, fear, anger, etc? Did your faith grow weaker or stronger?
Caregivers of those suffering from Alzheimer’s please answer the following questions:
1. Do you feel a greater sense of compassion for patients as family members pull away? What about the family members themselves?
2. Are you able to help family members cope in anyway?
3. Is there anything that you can do to prolong the inevitable?
4. Is it difficult to remain compassionate toward patients?
5. What do you do most to make life better for patients?
6. Please do your best to describe thoughts, emotions, and experiences that might paint a better picture.
Please feel free to add anything you think would be of relevance that was not asked or mentioned above?
It changes a person's outlook sometimes. Discussion is needed, either early or later. Going through an experience like that is, as you said, so intensely personal that it cannot help but become a huge part of one's character in the end. It makes a person so "full" (or at least it does me) that the opportunity to talk about it causes one to let it all spill out sometimes in a rush of emotion and fervor. We confess our sins and our blessings.
lol that must be evident by my very-long posts here. Sorry if it's too much; and I hope that you get some relevant information that you can use for your book. I wish you the best on that. And be careful, 'cause I'm just liable to get in the talkin' mood again.........hahha.
Oh, you are not bothering me in the slightest. I am taking in everything you are willing to share! All of the individual stories I have heard from people so far really move me. Each one is powerful.
I know that there are actually several hubbers around here who have experience with this. They've been an encouragement to me personally just by their willingness to share information and experience either on the forums or in hubs or comments on hubs.
Would you be so kind as to alert them to what I am asking?
Sure, I'll try.
Also, some may see this thread already.
Thanks a million times over again! It has been so hard to get the first hand accounts. I am willing to listen to (or read as the case may be) to anything you are open to sharing. Do you want me to email those questions to you or do you mind answering them here?
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