Alzheimer's Disease Support Group

Hello. I am Ileana. I am the daughter of an alzheimers stricken mother. I am also a mother, wife, and nurse.

It's hard to write this now that my mother is in the late stages of the disease. A disease that has taken my best friend. Plus, I have tears in my eyes and its hard to see the letters. Anyway,,,,

My mother and I had a very close relationship. We have been close my entire life. She helped raise my 2 young children and was with me for all of those hard parts of a young womans life like boyfriends and breakups, marriage, birthing, and careers.

My sadness, above all that comes with this horrible disease, comes from ignorance. Yes, I am a nurse, and I ran like a coward. At first when we found out she was ill I took her to Europe and on a cruise. I wanted to do things for her she has never done. As she got worse I got distant. Oh my God I ran like a coward! I will never forgive myself for that. You would think someone so close and so educated would stick through it but I didnt. I didnt. For the last year of year of her "somewhat" awareness I made myself unavailable. Sometimes she would call and the answering maching would pick up and I would hear her reciting my name and my brothers name as to not forget them. I was so scared and angry that I felt numb. By this time she was in a home which I promised I would never put her in. When I would see her once a week I didnt want her to touch me. I was scared.

So, of course, I was the first person she forgot. She didnt know me anymore. I would try to convince her who I was but she didnt believe me. She would complain that her daughter doesnt see her anymore.

So now I have come to terms with my anger and fear and replaced them with the love I have always had for her. Unfortunately it's too late. That last year for goodbye's is gone. She is in the very late stages of the disease.

One thing this very special woman taught me is courage. Yes, I ran from her but I will never, ever, run from anyone that needs me again. Courage, after all, is facing your fears and pushing forward. Yes I am still afraid but I will never run from fear again. I will face the fear/challenge with love and patience.

Now when I see her I sing to her the songs she used to sing to me and I hug her and kiss her. It makes her smile.

Please, does anyone dare to share a similar story with me. Help not to feel so alone and full of shame. I think I will drown in it. [file]

I want to welcome you. I am sorry for all you are going through. Singing to her now will give her comfort. Reading poems she liked will be appreciated also. You cant change the past. It is hard to watch our loved ones loss their abilities and become someone you dont know. You need to forgive yourself. You are doing a great job now.

Welcome again.

Lori

Oh, Lleana, you have been through a very difficult time and now you are facing the awful late stages of your mother's AD. Please remember that you are human and have to deal with this horrendous disease as best you can. I know you feel guilty that you distanced yourself from your mum but now you are once more supporting her in the best possible way. Never mind the fact that she "doesn't know you" as the daughter she once had. Concentrate on the fact she now DOES KNOW as the person who comes to see her and sings to her and makes her smile. Keep that up as best you can because that is very precious to her. Her smile is the recognition of this "new" person who loves her. Love conquers all; never forget that. Just keep telling her you love her because she will forget that too and needs to be reminded repeatedly.

Estoy criando con usted y para usted

Tony

Thank you so much for those words of encouragement. You are half way across the world and your words have touched me deeply.

Besos para ti,

ileana

ileana, Just a thought that struck me today as I was driving. I spoke at length to an Australian nurse recently and she was caring for her dad who has AD also. I made a remark that she was a nurse and it would be easier for her. Not so, she said. She went on to say that she could handle blood and guts all day long in the operating theatre but that AD was entirely different and she just could not tolerate it. They say there are horses for courses and so it is. Keep up the good work and the singing. When the patient loses the ability to communicate or understand communication they retain the ability to feel/experience the emotional support.

..gracias, y besos a ti tambien.

Tony

Post edited by: tony36, at: 01/13/2009 13:51

You are so right Tony. As a nurse people expected me to just soldier through. When I fell short of expectations I felt a lot of pressure from my family. Yes, I can see guts and blood, but I am just human after all. A thought occured to me last night...my mother could never see me sad. It would upset her so much. She was a ray of sunshine in the dark. She was always so positive and supportive.

How did you deal with your loss? Do you have any regrets? When will the hurting end? What did you feel when she passed? Relief, guilt, love?

Abrazos,

Ileana

Naples, Florida (usa)

When my mom passed I had mixed emotions. I was glad she wasnt suffering any more but missed the mom I had had. I found trying to get used to doing things that I had stopped so I could visit her were hard for me to start doing again. I have found peace. There are days when I will think of her and miss the mom I had but am glad she is at peace now. My mom died in 10/07 from Alz. I was able to be with her when she passed. I never had seen anyone die before. I was able to sing her favorite hymn as she took her last breath.

Lori

Ileana,

my Brid(get) had AD for 8 years or more and Fibrosis for 2 years or more. I did my best for her and kept her at home and did everything for her. I told her I loved her so often that she could not forget it. She passed away quickly and quietly, just as she lived. A great peace came over me and I spoke at her funeral in a totally relaxed way. I had done my best and could do nothing more. Currently I am dealing with disposing of all her clothes etc. Most of the time I am totally at peace but of course there are the unpredictable moments when the emotions flood in. Yesterday was one of these as we finished a few hours of clearing. I have no plans and I think it is wise not to plan so soon after bereavement. I have been told it can be much worse after about 4 months. Time will tell. I have put myself in God's hands and accepted His Will.

Se haga su deseo Senor

Abrazos,

Tony

Tony, what happens is you start to feel more what has happened. It becomes more of a reality. Bdays and anniversaries, etc. will be hard. At least that is how I am. I was able to enjoy this Christmas but couldnt last year. I had only been 2 months last year. I pray will continue to strengthen you and give you continual comfort.

Thank you for sharing with me those intimate last moments with your mom. Your mom was fortunate to have you there with her for her last breath. Hearing is the last sense to go in death so she probably heard you singing to her. Hopefully I can be there for my mom too.

ileana