[WishingOnAStar]

Hi, this is my first post so I hope I am doing things correctly. I am looking to find others who are dealing with the emotions that go along with loved ones and their battle with Alzheimer's Disease. My Mom is currently in the moderate stage, heading way too quickly towards the severe stage. Although she is suffering more than people can comprehend, so are the people that watch her fade away. I thought that maybe talking with others might help. If you can relate, I really would like to hear from you. If we help each other, maybe our days can be a little bit easier.

Have a blessed day.

[lizardlady]

Originally Posted by WishingOnAStar

Hi, this is my first post so I hope I am doing things correctly. I am looking to find others who are dealing with the emotions that go along with loved ones and their battle with Alzheimer's Disease. My Mom is currently in the moderate stage, heading way too quickly towards the severe stage. Although she is suffering more than people can comprehend, so are the people that watch her fade away. I thought that maybe talking with others might help. If you can relate, I really would like to hear from you. If we help each other, maybe our days can be a little bit easier.

Have a blessed day.

Hi WishingOnAStar, welcome to PC. You did just fine with your first post.

My Mom passed away a couple of years ago, but suffered from Alzheimer's. I can definitely relate. How is your mom's disease impacting you? What would you like to talk about?

[WishingOnAStar]

Originally Posted by lizardlady

Hi WishingOnAStar, welcome to PC. You did just fine with your first post.

My Mom passed away a couple of years ago, but suffered from Alzheimer's. I can definitely relate. How is your mom's disease impacting you? What would you like to talk about?

Hi, and thanks for your kind support. A couple of comments: I believe that the Alzheimer's is affecting my dad far more than any of us, of course we can't get into mom's mind to know just how much she is hurting. Each day I visit she says how very afraid and scared she feels. All she wants is to come home. When we ask her what she is scared of, she says she doesn't know. I really don't know how to help her besides trying to comfort her, rub her back, hold her hand and try to reassure her that everything will be okay....which, obviously, it won't. It will only get worse.

My dad on the other hand has never been able to express his emotions...everything is held inside. I think it started when his daughter died at the age of 9. For this reason, he gets upset when Mom doesn't remember him or gets confusted. I know he is just frustrated and hurt, but he comes home and is so heartbroken. His eyes are full of tears, but he will not shed them. I try to talk with him, but he just keeps almost everything to himself. Part of his pain comes from the comment he said to my mom years ago, "I will never put you in a nursing home, I will always take care of you." This is killing him because he has broken a promise to the woman he loves. He barely eats, which is not good, as he has MANY health problems. He, too, is fading away from me. I have no siblings, as well as no close relatives or friends.

I was blessed with WONDERFUL parents and I want to give back to them, however, it's very difficult due to my circumstances. I am disabled and suffer from severe depression and physical issues. This all began in 1975, so it has been quite a battle. Between their pain, and my own burdens, I am at a loss as to how to cope. I don't have too much left to give. I do see a counselor and a psychiatrist, but I don't seem to be making too much progress. I want to just throw in the towel, so they say, but I know that is not God's plan for me...I realize I do have a purpose. Any suggestions would be so very much appreciated. For now, I'm just taking it minute by minute.

Blessings!

[Ygrec23]

Dear Wishing,

My wife of 42 years is in the early to middle stages of something, whether Alzheimer's or another kind of dementia isn't clear to me. Her neurologist prescribes Aricept and Namenda. She lives at home with me. Her disease progress is quite slow. She knows she has it and she's scared, but she doesn't let her fear show much. We do not have any children, so there are very few visitors. I take it day by day, and so does Jacky, I think.

You might want to take a look at the following website, which is a for-profit thing (though it's entirely free) created for people like you and I. Despite the fact that it's for-profit, they do a reasonably good job of addressing the issues and putting people in contact with others who have similar dementia-related problems. Try it out.
http://www.caring.com/

I have the feeling (though I haven't researched it) that the anxiety the sufferers encounter may be directly generated by physical brain deterioration. I'm not sure of that, and I will do some research on it, but I think it's important. Do tranquilizers work on your mom? Lorazepam or Xanax? Do you have easy, direct communication with your mom's doctor(s)? You should. Your mom sounds like she would still be able to legally sign HIPAA waivers for you and your husband, permitting her doctors to speak freely with the two of you. Has your dad talked with a therapist? If he were my dad I'd kind of pressure him to do something like that.

Well, you know that this thread will continue for years and years. So please feel free to continue to post and I'll be sure to read the thread and respond as soon as I can. Along with all the other PC members who can relate, and I'd bet there are many. My best wishes for your mom and yourself. Take care.

[shezbut]

Hello Wishing,

I can relate to your post. My Grandma had Alzheimers, Parkinsons, and a few small strokes. I took care of her from moderate-severe. It was very difficult for me emotionally. When grandma came out to me, she could no longer talk. Her face was expressive. But she couldn't understand everything people talked about. Grunts, head nods, and expressions were her only ways to communicate.

That was probably about 13 years or so ago. I don't think that I will ever forget sweet incidents that occasionally occurred. Those are the sweet memories that need to be held onto. Years later, I became a CNA and worked at a nursing home. Caring for others needing assistance is a passion that I've held onto.

I am now disabled myself, but I still have things that help me fulfill my desire. Volunteering as a friendly visitor to the elderly and respite care helps me and it helps them. I can relate to their problems in many ways, someone being there to talk with or play games and look at pictures together can be a real lift for them!

I'd recommend looking into elderly county programs that exist where your parents live. I work for Elderly Network, which does have different programs & resources which are available. They don't just accept regular Joe's off the street to help. They do look into volunteer background (for safety), and try to match personality styles to make good matches.

Oh ~ one other thing. YGrec23's comment about going over HIPAA with your mom now would be especially helpful! So many times, doctors and nurses can't share any information with family members because HIPAA laws (there to protect personal info). Your mom can still decide who she trusts to be involved in her care. Your dad can too. Then, educated decisions can be made as the disease progresses. And you won't have to wonder or feel guilty for decisions made.

Gentle hugs and best wishes sent your way ~ It is such a rough road at times. You're in my thoughts

[arcangel]

My mother suffered w/ vascular dementia and I have a sister who I am afraid is in early stages of Alzheimer's so I can relate. Not sure if I can help except to say that while the person suffering w/ any form of dementia stands to lose the most, it is the people who love them that will suffer the most. I doubt that helps much
Take care of yourself too.

[WishingOnAStar]

Hi Mike - Please don't think your "comment" wasn't helpful! Just the opposite. When you're suffering Alzheimer's stress and you visit a Alzheimer's patient who is also your Mom and fading away in a life of serious confusion... don't ever think that it doesn't help to know that other people have fought this battle and have come through it....painful as it was...you survived. Post anytime and if I every can be of help, please let me know! Thanks again~Jeanne

[WishingOnAStar]

Hi Lizard Lady - I have been replying incorrectly. I don't know if you received this comment or not. If you have, please disregard. I just didn't want you to think I didn't appreciate you or your response. Have a great week. ~ Jeanne

Hi, and thanks for your kind support. A couple of comments: I believe that the Alzheimer's is affecting my dad far more than any of us, of course we can't get into mom's mind to know just how much she is hurting. Each day I visit she says how very afraid and scared she feels. All she wants is to come home. When we ask her what she is scared of, she says she doesn't know. I really don't know how to help her besides trying to comfort her, rub her back, hold her hand and try to reassure her that everything will be okay....which, obviously, it won't. It will only get worse.

My dad on the other hand has never been able to express his emotions...everything is held inside. I think it started when his daughter died at the age of 9. For this reason, he gets upset when Mom doesn't remember him or gets confusted. I know he is just frustrated and hurt, but he comes home and is so heartbroken. His eyes are full of tears, but he will not shed them. I try to talk with him, but he just keeps almost everything to himself. Part of his pain comes from the comment he said to my mom years ago, "I will never put you in a nursing home, I will always take care of you." This is killing him because he has broken a promise to the woman he loves. He barely eats, which is not good, as he has MANY health problems. He, too, is fading away from me. I have no siblings, as well as no close relatives or friends.

I was blessed with WONDERFUL parents and I want to give back to them, however, it's very difficult due to my circumstances. I am disabled and suffer from severe depression and physical issues. This all began in 1975, so it has been quite a battle. Between their pain, and my own burdens, I am at a loss as to how to cope. I don't have too much left to give. I do see a counselor and a psychiatrist, but I don't seem to be making too much progress. I want to just throw in the towel, so they say, but I know that is not God's plan for me...I realize I do have a purpose. Any suggestions would be so very much appreciated. For now, I'm just taking it minute by minute.

Blessings!

[WishingOnAStar]

Hi Grec23 - My name is Jeanne and I am saddened by your wife's diagnosis of Alzheimer's Disease (or other dementia). It is a terrible illness and I can only pray that a cure will come about in the very near future. It is wonderful that your wife is not letting it take over her life...it is so important to her well-being that is doesn't. Staying active and keeping the mbrain stimulated is vital...so glad it has not overwhelmed her. How about yourself? Are you handling things okay? I will glad to chat with you if you need a friend.

My Mom has been going through this about 4 years now...maybe a little more. It started slow, but continued to advance. Today she is very close, if not in, the severe category. It is so sad, so very, very sad. She has been given different meds for her anxiety, but nothing seems to help to any degree. All she wants is to go home, to see her mother, to not be afraid or scared. For the most part, that is the entire conversation when my Dad or I go visit. I moved into their home when both of them got sick, about 3-1/2 years ago. My Dad is 80 and is in the late stages of lung disease, he's fractured his back twice and has many, many other health ailments. Over all, he is not in good shape and he is heartbroken over his wife's condition. I am going to give him the website you gave to me. I looked at it and found it quite interesting, as will he.

From all of the research I've done, you are quite correct in saying that the Alzheimer's patient does suffer directly from the physical brain's deterioration. I have found a number of articles and pictures of how the differnet stages act and where the brain mass "make-up" is at that particular time. It bothered me so much, to see how much of the brain mass was lost over time, that I stopped researching for the most part....it is saddening.

Please hold on to hope, and most importantly, hold on to each other, and enjoy every day and everything around you to the fullest. Life is precious... I thank you so much for sharing your story with me. I am sad, but hopeful for Jacky, as they continue to find new things to help dementia patients. She's on some of the newest meds, and I know they have worked well for many people. My Mom was on them, but they said she was actually to advanced for them to be really effective. Try your best to stay strong and don't beat yourself up if you have a bad day---it's okay. I'll be around the forums, so contact me anytime and if I find something I think you'd find interesting, I'll pass it your way. You take care....Jacky too! Best Wishes & God's Blessings ~ Jeanne

Blessings ~

[WishingOnAStar]

Hi Again, Ygrec23 - I meant to tell you that we've been working with an attorney to work on all of the legal aspects of medical rights (all rights) with regards to my Mom. I believe Powers Of Attoreny are in place and she has signed papers while she was competent to sign. I do appreciate the HIPPA comment though, and did run it past the paralegal just for verification...seems as though everything is in place.

As far as my Dad and a therapist... I have one that is willing to work with him, and has a reputation with men's counseling, but my Dad just keeps putting it off. I just don't think I can get him there. The more I push, the more frustrated he gets. At the same time, I know it would be such a big help to him. I'm rather lost as to what to do. May that should be a thread...I don't know. Thanks again.

[WishingOnAStar]

Shez....I just wrote you a HUGE reply....and I mean, HUGE - and I actually deleted it. I'm not in a "positive" frame of mind to do it again, as alot of things are bothering me tonight. Overall, it said how happy I am to become your friend and how much I admire you for the work you have done, and continue to do, with the elderly. I know that I have a "fit" in this area also, I just have to get things with my folks situated (I'm afriad I'll be losing them before too long and this scares me to a point I cannot talk about in this forum). I have alot of love and compassion that should not sit in my heart and not be shared...that is a waste of God's gifts to me. Hiding in my room, (that has not began a clutter issue) 24/7, is not the answer.

Also, I'm sorry that I didn't post to you sooner. I've been trying so hard to reply to each person who comments, but being new, I'm having trouble keeping up. I went through these Alzheimer's threads and was sure that I had written to each and every one of them. I apologize for my insensitivity...didn't mean to seem rude. I'm trying to learn about subscriptions and such to see if that might help me to not miss anyone...hope people will be patient with me.

Dad had a really sad day seeing Mom today. She was really happy to see (and the cookies he always brings her) and willingly accepted his hug and kiss. They chatted awhile, but then she began her "on and off" routine about -- you're not my husband, I don't love you, I don't want you to kiss me, etc. When he went to leave she wanted nothing to do with him....not even a little kiss to say goodbye. She just shuts him out of her life. He is heartbroken and I don't know what to do. It really hurts because when I go to see her she is very happy and positive. She loves me to rub her hands and her back, she says I love you all the time, she smiles and talks (although it's about the same thing over and over) and we always depart with smiles, hugs, come back soon, I love you's, etc. When I come home, my Dad wants to know how things went, so I tell him. Now, when he goes, he gets this. Sometimes my Mom gets "mean" with me, but not too often. I'm not sure what to do. They always were a happy and loving couple...I don't know why she is doing this to him. Any ideas how I might help my Dad? I truly believe that by year's end, he is going to die from a broken heart. He is not well to begin with, he's losing weight, not eating well, doesn't care about much, wants to dies and will not seek counseling (even though my couselor has just the right person (she thinks) ready to see him. I think he's in the slow "s-word" mode, but when I talk to him he says he's not because it's against his religion. I think differently. I'm in my "I don't care mode"...with the exception of the people and dog I love....so I don't know. I just wish the world would end really soon. Thanks for caring, my dear.

Special Blessings ~

[shezbut]

I'm sorry that your dad took your mom's behavior personally. It sure is hard not to though! I know.

My grandpa was dealing with grandma's hand up in the last year of his life. He didn't understand it either. Very different than her normal demeanor with him was. Maybe grandma felt this way towards him for years, and in her later years found the will to push him away?? Don't know ~ it's hard to say.

It is so hard to see those that we love struggle so much in basic life. Heartbreaking! There really aren't words that can express the emotions that we feel inside. Sorry is a huge understatement! Just holding your dad's hand and lending him your shoulder to cry on can help him a lot. Of course, you need emotional support to help you get through too.

Thank you for posting back to me. I was worried that you didn't like my response to your initial post . Sorry, but I am sensitive. It made me feel better to see the remark on your page though.

Hope that you can find some area of relaxation and peacefulness. It takes time, of course, but I hope that it comes soon! Very best wishes to you.

[lizardlady]

Wishingonastar, some random thoughts in no particular order....

Be sure there's a power of attorney in place for you to make medical decisions for your mother in case she and your father are not able to make decisions for her. If she has a living will be sure the nursing home has a copy. If she has a DNR (do not resesicate) be sure the nursing home has a copy of that.

Ygrec, was spot on about brain damage causing personality and behavior changes. For your sake try to remember that "mean" comments are not personal. Maybe you can help your dad see that. It's not easy.

For me one of the hardest parts or dealing with Alzheimer's was watching my mother slip away before her body died.

Would your dad be willing to go to an Alzeheimer's support group? Maybe you could persuade him to go to be there to support you?

Your dad may never cry about your mom, or he might not be willing to cry in front of others. Can you come to terms with that? Let him grieve in his own way. And dealing with Alzheimer's is an ongoing greiving process. At the same time if you need to cry let 'er rip. There were nights that I would leave from visiting my mom and sit in my truck bawling my head off before I drove home.