My mother has never been "officially" diagnosed with AD. She has lots of the symptoms, but she also has symptoms of lewy body disease and frontal lobe dementia. Does it really matter at this point what she has?

She is not on any medication for AD or anything else like it. At Hospice's suggestion we have recently taken her off of meds calcium D, lippitor, actonel - just to reduce the amount of pills she has to take. She is still on her heart meds, a multi-vitamin, stool softeners, lexapro and sleep-aid.

The last two weeks has seen a real down-turn with her. There is no conversation with her. She speaks a lot less than before and it is completely nonsense. When she sits up she slumps to one side. She has been blind in one eye all her life but no one could ever tell it. Now she keeps her head turned all the way to one side so that her good eye is in the middle. But she rarely looks at you when you talk an never moves her head to see something you've brought or point out to her.

If it were up to her she'd stay in the bed all day, but sitters get her up in the wheelchair just for a change of position. They bathe and dress her everyday and she eats most meals at the table in the dining room with the other residents.

So,again, is there any point in trying to find out exactly what her diagnosis is? Her own doctor has told me that she doesn't need to come back to him anymore. The Hospice doctor can probably handle anything that comes up.

Sylvia, I am so sorry to hear this. No, I suppose as far as the disease has progressed, as you have said, it is too late to help her with the proper meds. I think you can probably only love her and make her as comfortable as possible.Blessings

I'm so sorry to hear about your Mother's decline. If she was on cholestrol meds,,that would probably work with any heart meds that she's been on,,due to help slow or prevent any further heart damage.

It does not seem that it matters what the diagnosis is. I am so sorry to hear of her decline.

All you can do is take care of her, keeping her comfortable and safe, which you are certainly doing.

My thoughts are with you,
Marci

Sylvia, I'm so sorry about your Mom's decline; whatever she might actually "have" seems irrelevant. Love to you, and hang in there.

We don't really know for sure if my Mom (92) has AD or some other dementia. And it certainly does not matter right now except to find what treatment works to lessen the symptoms, like "sundowning". Her neurologist came on the scene too late, I guess, and never tested her properly. Just put a check-mark next to Alzheimer's on the diagnosis.
We just do what we can to help her along the way and give her lots of love.

Sylvia,
My heart goes out to you!
The most important thing to know that Mom has now, is YOU. Keep on loving her, and making sure she is comfortable. Hospice seems to be a tremendous help. Keep us posted.
Maebee

You're right... none of that matters. What name they want to give the disease does not matter anymore.

For my Mom's last 4 months of her life, all that mattered is that she was surrounded by love, gentleness and a feeling of well-being as much as possible.

When she could understand me I talked close to her face, because like your mom, she did not seem to focus or notice anything more than perhaps 6 inches from her vision. When she could understand less I spoke more slowly, smiled more, held her closer. I wanted so badly to connect...I found touch worked better at times. I began to rub her neck which she loved. I would comb her hair. Put cream on her arms, massaged her legs with lotion. We would 'watch' TV together but I would sit on her bed while she sat on her wheelchair and I would put my head on her shoulder. She would pat my cheek and just be content. We held hands a lot. I read to her (I have learned more Bible verses in the last 6 months than ever before) and at the end, I sang to her. Nope, I can't sing.I have musicians in my family but I am not one of them. However, old hymns would comfort her and I could sing the same ones over and over at the end. Sometimes she would hum along with me.

One time, before her amputation, I went in and the nurse was with her, bathing her. She saw me and her whole face lit up. She pointed at me and the nurse kept doing what she was doing... my mom got more and more anxious and said
"Her- that woman- I need to be in her arms." So we covered her wet little body with a quilt and I held her for a long time, finally finished her bath later.

She didn't know who I was, she just knew I loved her.

A diagnosis doesn't matter now, the Dr is unnecessary as long as the Hospice Dr is involved. All that matters is that you have help keeping her comfortable and that you gently keep her feeling loved. It was a sweet time for me to say goodbye. Every night I said "Goodnight" knowing I may not see her alive again.

And one night it was true.

Although I miss her terribly, I'm glad I had gentle, sweet time to walk her part of the way home.

I will be praying for you, Sylvia, as you are doing the same. Sending you (((gentle hugs)))

Mamas Friend is so right....just let her know how much she is loved.

I think we as caregivers just need to let our LO know that they are safe and loved. Sometimes it is all we can do--but at least we are doing something.

Live each day as if it is the last-- that way you will have no regrets. Say your goodbyes, give your hugs and kisses, say your I'm sorries.

AD is called the LONG GOODBYE but the end always comes to soon. With Dad it took over 2 years for the end to come-- I couldn't have let go in the beginning but by the end- Dad was ready and I could say, "IT'S OKAY TO GO DAD, WE WILL BE OKAY"

My thoughts and prayers are with you.....Christy

Thank you all. You have confirmed what I guess I already knew. I want to do all that I can to help my mother, and have never really been impressed with her doctor. The farther along she gets the more I think it is something besides AD, but like you all have so lovingly said - it doesn't really matter at this point.

She is surrounded by wonderful loving women who have been with her nearly a year. I am with her every day for varying lengths of time. My brothers visit when they can and call often.

Bonnie, like you, I use touch a lot to connect with her. We hold hands a lot. We sing a lot. Music is such a powerful force. While she cannot speak two sentences she can sing a complete verse of Christmas carols or old hymns. We enjoy our time together. I always hug her, kiss her and tell her I love her when I leave, for I know those might be the last words she hears from me.

This past week I was supposed to have been in South Dakota with my in-laws who are moving from an apartment to assisted living. But we decided they needed more help for a longer period of time, so hubby flew up there alone. No one knew the rest of us were home. I truly had a vacation. I had already arranged for my mother to be cared for for the week, so I let it ride. I haven't been to see her or talk with her. For all they know I am on my way home from SD right now. I feel a tiny bit guilty, but I desperately NEEDED this rest. I know you all know exactly what I mean and I'm not even a 24/7 caregiver. I will see her tomorrow and she will think I skipped a day. It will be all right. I"ve been in contact with the Hospice nurse and my brother has been to see her twice so she hasn't been neglected. And I am refreshed - ready to pick up the reins again and go forth into a new year - and all that it may hold.

You did the right thing on getting rest... and you are doing all you can for your Mom.

I wasn't with her when she died. She just stopped breathing... and went to heaven. But I know I did all could while she was alive and somehow, it was not in God's plan for me to be there. I held her hand and walked her home as far as God allowed... and then He did the rest.That is where you are now.It is sweet and sad and heart-wrenching, but I read you are doing all you can.

I applaud you, and I will be praying for you.

Bonnie, thank you. I want to be with my mother when she passes, but I know that isn't likely. What you have said helps me with that tremendously.

I visited her today. I'm not sure she realized that I'd been absent for a week. In one sense I"m glad, but in another it breaks my heart. She is happy. She had on a new outfit one of her sitters bought for her. She went to the New Year's Eve party last night with another sitter who took her picture with her 'Tiara' on and waving her shaker. She is surrounded by love. What more could I ask?

quote:

Originally posted by SylviaE:
>I visited her today. I'm not sure she realized that I'd been absent for a week. In one sense I"m glad, but in another it breaks my heart. She is happy. She had on a new outfit one of her sitters bought for her. She went to the New Year's Eve party last night with another sitter who took her picture with her 'Tiara' on and waving her shaker. She is surrounded by love. What more could I ask?

Sylvia, you said two very important things in
this post:

1. "She is happy" and
2. "She is surrounded by love."

You are right- that's all you can ask for.
You most definitely did the right thing by taking some time for yourself. Lord knows you needed it!

You are doing everything right with her. And the music- that is such a powerful, healing force. Balm to the soul. Never underestimate the power of its vibrations!!

And by the way, when I say "healing", I don't mean it in the literal sense of the word. I mean it heals the soul.

Thank you Beachgrl. I appreciate your affirmation of what I am doing. Even if you think you are own the right track, it's helpful to hear other people say so.

My mother was a wonderful musician. She taught piano for over 50 years - close to 500 students just in this town, not counting all the other places she lived.

She was a MUSIC teacher, not just piano teacher. She believed in the power of music to heal, just as you said. She knew few, if any, of her students would make a career of music but she taught us all how to enjoy and appreciate music as well as giving us a deep abiding love for it.

I am a music teacher as well. With my students I try to pass on all that my mother taught me. I haven't been able to stay in one town for long (Air Force husband) so I don't have the same kind of legacy as she does here, but I look at it like I have sprinkled my mother's love all over this country.

I am grateful, that while she can no longer play the piano, violin or organ, she still has music in her heart and sings it out with the most beautiful smile!

Sylvia,

I too, was a music teacher, taught classical piano for 13 years & loved it. Someday I may return to it, though now I'm pretty rusty.

Never meant to quit, just took a break when I moved down here... then things happened... one thing led to another, & time got away from me.

However, music is & always will be my first love. I am now looking into learning about music for healing & transitional therapy.
It's a new field which I just heard about. Fascinating...

I'm hoping that one day I may be able to combine it with nursing as a therapeutic tool.
We are so backward in this country in so many ways. We think we are the cream of the crop in the area of medicine, but there is just SO much more to healing, & therapy, & care of the dying, than surgery and pills. At least some people are starting to realize this.

Anyway, my mother played also, as did my grandma, who also taught. They were the ones, especially Mom, who instilled the love of music in me, & for that I am forever grateful.

And make no mistake, you have made your own mark. Perhaps you even did one better, by spreading your mother's legacy "all over the country."