Dementia Support Group

I can feel your pain as I have been and am there. I am not adopted but Mom has hurt me greatly because even though I have done all that I can do and all that can be done, my other sibblings have done very little yet they are the most marvelous people ever. I kept Mom at my home for 14 months until I could no longer manager her physically. I too had a baby monitor and even sewed bells on her comforter so I would know if she tried to get out of bed (which she did frequently). She was no longer able to walk by herself, fell several times, etc. She is now in a nursing home. She knows me most of the time. Yesterday she thought it was 1978. The home has solved some problems but not all. The staff are very caring and are very nice to her and to me. You are correct this is a very horrible time for her and for me. I too am mad at God, I do not see how this can be but it is. Take comfort in the fact that Mom did tell me one thing - that is no string that does not end, good ones and bad ones. I am so very sorry for both of you and hope you feel better soon. Please know you are doing and have done all that you can do. Apparently there is no stopping this disease.

When I first found out I have this disease I felt like you are writing about. I am really sorry you are thinking what you are thinking. I have found and learned that I need to live each day at a time and not live in the future based on what may or may not happen at some point in time. I can only control what I have control over and not at what may happen sometime in the future. I do not put feelings in myself by thinking nothing but nasty and rotten things that so far has not even happened. I have learned and adjusted to my new life and learning to live with the changes that come with living with this disease. I will not and do not listen to all the negitive stuff that is said about this disease, yes there are a lot of things that goes along with this disease but as long as I was depressed and negative about my disease my life was even worse than what it really is. I completely changed and got off my pitty pot and have taken a very postive attitude and live a day at a time. It is so sad that you are feeling so sad and upset about something that you really do not have any control over at all. Sorry to be so blunt but she is not going to get any better with such a negative attitude and no she is not going to get any better with a postitive attitude but your life would be a lot more enjoyable when you finally come to realize you can only do so much and you do not have the power to change her journay thru the rest of her life. I can feel and tell when someone is out of sorts because I have what I have and I really just want to get away from them. I want to enjoy my life as much as I can and it will not happen when I am hanging out with or be around other people that are feeling so bad about something they can not control and it just puts a lot more stress on me and I do not need any sour feeling people around me, it does not help at all. Do what you can to enjoy each day but please do not be so miserable around your Mother because believe me she feels your very negative and terrible attitude. God Bless Phil & Flops

I am sorry if my post offened you. I dont show my mother any negative at all that is all how i feel when i am alone in my room. I try to make every day for her as happy and as special as i can. When we go to the Doctor aptmnts i take her to lunch. When i run to the store i bring her home flowers. I bring her a new outfit a week cause a she loves clothes, I hold her had as we watch tv i show her love every day. When shes tired of feeding herself i feed her. When she calls out in the middle of the night she calls me Ma. It is not her i hate it is the disease that is taking her from me but most of all from herself No one wants to see the person they love suffer for any reason my father taught me how to fix anything and everything this is the only thing i cant fix. it is totaly out of my control that is what is so hard for me. I cant even begin to imagine how she feels trapped inside she tries so hard to communicate but what comes out like gibberish i can seem to understand. I have a bond with her that no one has for me i guess is the one good thing that happend but for her i am tryng my best to give her everything she sacrificed for us. Again Im sorry if i offended you

Oh Henry, I feel your pain and understand your sadness. I know you have been a strong and wonderful advocate for your Mom and I'm sure she feels safe and happy with you there. That is all that matters at some point and you've done a beautiful job.

It is hard to provide care for someone with this disease as it changes every day and it is filled with such sadness. There are moments of joy when I have very special time wtih my Dad that I know I would never have had if I didn't need to spend countless hours with him. We need to share our feelings (happy and sad ones) just to keep moving some days. I know this so well.

Please remember one thing...you are a good and caring daughter and she is so blessed to have you with her. I'm sure you always reflect love and tenderness while you're with her, but I totally understand the need to release the exhaustion and sadness when away. This is good to share and I feel is the only way I can keep moving some days.

I wish you a good remainder of the week and a little joy in the weekend. Keep going my friend, you are making a huge difference in this world for your Mother. Love and Hugs...

I think you are an amazing daughter and caregiver after reading thru this post and I commend you on such an incredible job. I don't think you offended. Phil just sees things from a very different perspective than a lot of us caregivers do and he doesn't mind telling like he sees it. I could tell you were trying to defend yourself in your response and you don't have to. You are so entitled to your feelings and we all go thru these really tough times and our emotions are bound to spiral at times. It hurts like crazy and especially for "fixers" like me who want to make everything better. I too have gone thru questioning my faith. I don't understand God's plan in all of this. I don't know if we ever will. You are doing such an amazing job and she is so blessed to have you there for her. You cannot fix her but you are making her time here better by all that you do. From what I read I feel like I really need to step it up with my Mom. You are not alone. We are all here for you. I couldn't save my Daddy from his illness no matter how hard I tried. It was the worst time in my entire life. It does end. I understand how you feel. Just know, really know that you are giving her what so many don't have - love, attention, care, etc., etc. and one day you will be able to look back and know that you did the very best you could and then some. Big hugs to you!

Thank you

Henry:

Yours is the first post i've read since joining this support group. Your post was very beautiful and after a very trying day with my own two children I came back home after their meltdowns. You see I was on the way to my grandmother's home who was recently diagnosed with dementia. I knew after visiting with her and then coming home to cook for my family and take care of my infant children that I just couldn't handle it all. I turned my car around and came back home. I called my grandmother on the phone and she answered sounding angry, and tired. Not like herself at all. We would talk everyday like school girls and now I call her once a week. Not because I don't want to hear her voice but because it hurst so much inside to talk to what has become a stranger to me. Because of your post I will continue to do what I have done while my grandmother's mind was there. I will call her everyday, I will take my babies to see her once a week and I will continue to help her with her bills, doctor's appointments as I have done for her in the past.

Learning that she has dementia has torn my family apart. I feel that some of her children have abandoned her. She was such a kind, strong woman when she was young. A beautiful woman to eight children. Little education but managed to be the strong matriarch of my family. I am who I am today because of the love and strength she gave and instilled inside of me. It hurts beyond reason and I do not know how I will continue a relationship with my grandmother but your post has definitely see the beauty that can also come from this horrible disease. Thank you!

Mygrand-

Unfortunately you will find that there will be some family members who just will not help at all. For me the hardest part has been getting over the lack of compassion, effort from his own children. I have gotten over his diagnosis but not the cruelty of his children who NEVER call, etc.

You know what i have realized most of all is that my mom is scared. Deep inside i know she is there but is trapped. They say people in comas can still hear you speak to them. I hope that my efforts make it thru to her and she know i love her very much. I wish i could take it all away and make it better but i cant. And i cant let her think she is notloved for that alone would be enough to kill someone that thinks there all alone.

I just wanted to send some love to you all today. I have been/am there some minutes of the day, sometimes hours in the back of my mind where you all have been. I read alot of posts and don't post much because I have a very active 2 year old son and many other family issues going on...all at the same time of watching my beloved young mother decline. BUT, every Sunday my dad brings her from the Assisted Living facility she lives in and they come for lunch. I sit and hold her hand and listen. The power of touch is so powerful. I can't say when she leaves after 3-4 hrs that my heart isn't heavy or that I don't feel sad, but I am trying to remember that right now, it's about making HER feel loved, wanted, valued and human. She is barely 63 yrs old and I know this is not what she planned for her life, She was diagnosed at 58, although wrongly misdiagnosed which isn't uncommon. Her worst fear was "losing her mind" and I remember that so clearly growing up. It has happened for the most part. She still has so much to give though. I may not understand much of what she says, but the beauty and the lesson FOR ME in this has been, the very independent, impatient, judgmental mother I had growing up is gone. She is nothing now but PURE LOVE. She is childlike, she laughs and when she does have those lucid moments and cries and asks what she did so wrong? Why is God punishing her? She is not ready to die...My dad and I both reassure her that this is NOT her fault, that she is truly a beautiful woman (SHE IS TOO! She keeps looking better and we look more tired and worn! LOL) and we remind her in short words that SHE makes a difference, That she helped so many people in her lifetime, her career and now it is OK for her to rest and take care of herself. I miss her more than words can express, We are best friends,,,,and we share a bond NOTHING..not even Dementia can break. Thanks for listening to me. This disease entered our family so quickly and with such vengence. We did not know what hit us, We don't have all answers but over 15 months of her living in a lock down unit, I truly believe she is still here and taken care of the best that the situation warrants. My dad visits daily and my 2 yr old son LOVES his Granny B. He does not see her limitations. He simply feels her love and knows the heart she has inside that trembling body. Sometimes I wish her suffering would stop, but I have to believe there is many more lessons that will come from this. The family members (some her own children) who have chosen to stay away, will have to live with that. It's their deal. Not mine.
Hugs and love to you all!
This disease is truly the longest goodbye.......