Mom passed away today. A mixed blessing. She was diagnosed with AD only 4 months ago. At 91 years and almost blind we made a lot of excuses for her forgetfullness and behavior but when the hallucinations began we could deny it no longer.
I've only been on the internet for a couple of months but have found your site most helpful and supportive. I knew very little about AD before and I am a medical technologist working in a medical clinic. Anyway, you helped me understand how to make mom's last days happy.
On Monday (Columbus Day) I spent the day with mom because she was having chest pain and shortness of breath. We reminisced all day. It was quite pleasant. We gave her nitroglycerin tablets which made the pain go away which made us think it was just indigestion. She enjoyed the attention of all her daughters (3 of us). It gave me a good day to remember.
Today she woke in pain and terribly short of breath. Pat (the live at home sis) called my other sister in the next town. Peg called me at work asking what to do. I said call the doctor.
The doctor didn't have room in their schedule to see her until 4:15 PM. So she called me at work again "Now what do we do?" "Get her to the hospital" I said. "Call an ambulance" I still didn't think it was an acute situation so I continued at work until 11:00 when the last patient came in. Then I took off to the hospital.
When I got there Peg, Russ, Pat were all there and Peg told me they wanted to put her on the ventilator. I said NO! Then I saw her struggling for breath. Trying to push the oxygen mask off. Saying "Get this stuff off of me JoAnne , I want to leave" She knew who I was. Last evening she did not know me. I started to waiver.
I tried to help calm her down but she was really fighting. I tried to help hold her down while they were trying to start I.V.s and she fought me all the way. I said "Mom, you have to have this oxygen mask. They want to put a tube down your throat. Do you want that?" She said an emphatic" NO! I want everything off of me."
I don't know if she really knew what that meant but that was my answer. They gave her morphine. The doctor asked me once again if we wanted CPR or Ventilator and again my answer was NO!
Shortly after that she lost conciousness and about 10 minutes later she was gone. She had all 5 of her children around her. I was the only one to watch her die. Oh how it hurts.
I keep questioning my decision. We had agreed ahead of time that we didn't want heroic measures but when it comes right down to watching your loved one struggle it's hard to stick to that decision. I know in my head that it was right but my heart is still very much hurting.
Mom's brother (100 years old) passed away in a nursing home just yesterday and we had not even told her. I wonder if she knew that now all her siblings were gone and she was the youngest of 17 that now it was her turn. I just don't know. I know she is at peace right now and is probably having a grand reunion with my DAD.
Thank you for your wonderful site. I will pass on all this information to a friend who's mom has AD and she does not have the internet.
Right now I turn to the only one who really understands. My comfortor, my Lord, and right now Mom's friend. I just ask that He take her by the hand and bring her to my DAD and let her know that we are all OK. We are all OK because she was such a special MOM. Goodbye MOM. I love you....... Thank you.
I emailed you last evening about my mom's passing. I forgot to introduce myself. My name is JoAnne and my mom's name is Esther Bourbeau Ward . I want to know if I can use a poem found in the inspirational poem directory. It's called "To Those I Love and Those Who Love Me."
I would like to read it at her funeral on Saturday. It says author unknown but I thought I should ask first. I'll be checking email periodically before then. It would be appropriate to add Mom's name to the memorial list even though I wasn't active on a message board or chat room. She was diagnosed with AD and we have lived through some terrible months with her.
Like I said
I am so grateful I found this site as it helped me understand her and able
to relate to her much better. I wish everyone who has a loved one going
through can find such help early on. It made my life and hers so much better.
Marsha, What a wonderful person you must be. I would like to know you personally. You have such a way with words and are so very compassionate. Your letter did comfort me and I shared it with my sisters. We had a good cry together. And what a talented writer and poet Steven Stoker is. I really appreciated that poem. It touched my heart.
I am beginning
to feel better about the circumstances of Mom's passing. I realize I don't
have as much power over the worlds events at all. I could not have caused
or prevented those particular events. It was meant to be.
After having read the documents on your web about death and dying, I realize now that MOM had been saying goodbye and preparintg to leave us for the last 3 months. We just didn't recognize the signs.
One comforting thought though is one that the priest sort of alluded to during her eulogy at her funeral. He knew Mom well from his childhood through his adulthood and priesthood. He knew that she was very much a realist.
However he said that sometimes as the end draws near these elderly ones sometimes have visions. We often call them delusions, or hallucinations but he prefers to think of them as visions. Who are we to question?
One week before she died Mom told me and several other members that she had gone to Mass in her own living room. The priest serving that Mass was Jimmy (Father Jimmy McCurry).
We thought it was one of her delusions and just said "Oh! How nice." After she died I looked back on that as her having made her peace with God because in her mind she had really been to Mass.
However when planning the funeral I called Jimmy (Father Jim) at the Seminary to see if he might be available. He was thrilled that I called him, and yes of course he would be there.
During the eulogy he mentioned. "Just one week ago Esther had a vision of me saying Mass. for her and here I am today saying her Mass. " Vision, or delusion? Does it matter?
Now when I think about other "stories" Mom told. I'm inclined to think that she'd been having visions for quite some time. They wern't just wild meanderings of a demented mind. Mom was never one for fantasy. She was very much a realist, like myself. No fairy tales, no outer limits, no supernatural. Just reality.
She also was not even particularly religious in later years. Because of infirmities, she was not able to get to church very much in the last 10 years. But during the last 3 months she began seeing "beings" coming down from the sky.
She described them as children but they must paint themselves with invisible paint or something because neither my sister Pat could see them or my Aunt Hazel who sometimes joined them while sitting on the porch. And she said to me "I know they're real because I've talked to them". She was very adamant about that fact.
She also saw people without faces, or hands. She said she saw regularly a group of people who would walk by her house, and they had to stop and touch the tree out front and say a prayer. They also had to wear these white hats for Jesus.
These stories were repeated several times and it made us think that she actually experienced these things in her mind. I don't understand the significance of all this except that I think she had one foot in both worlds at the same time. I'm so glad I was with her during all this.
Once (thanks to the info on your website) I understood how to just accept her as she was and to enjoy her stories it made our times together very special.
I really am beginning the healing process. I still face many hard times ahead. Sometimes I would just like to stop the world and get off for awhile. I need to be alone and recoup. But in the real world I have to work, I have family who need me and sometimes I am stretched beyond what I can handle but I'm not alone.
Many others have been through this and I know I can make it. This week my daughter Danielle (17 years old, senior in High School) was in a band concert at school. She is a very talented and gifted musician (Thanks to my Mom who also was a very talented and gifted musician and encouraged all of my children in their music ventures.)
Any how, Mom had been to every concert and show that Danielle was in and this was the first without her. I thought I would be OK. But no, as soon as the jazz band (featuring my daughter on the trombone) started playing, the floodgates opened up. I know she would have been so proud.
My Hubby tried to reassure me by saying that she could hear it even better now. I know that but...it still hurts. I realize that you are still going through hard times with your Mom and have some tough times to face yet. I hope you will be able to receive comfort in the same measure you have been able to give it to others. Thank you, Thank you, Thank you.
The above letters were written by someone who is very special to me, and it is with her permission that they are being published.
JoAnne, as you might have guessed, is an extraordinary woman...and to be willing to reveal such raw pain, takes an enormous amount of courage. I stand in awe of this friend of mine, and I thank God for people like her who wants to reach out beyond the pain and help others!