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Jeannie Jones
01-07-2009, 09:04 PM
Nafalia's on the phone with a request. Her words begin now:

This time, my spirit family, I come to you not for me, but for someone very dear to me. My sister Mary Jo, who is 76, is in St. John's Hospital going through all the testing, and most likely it appears it will turn out to be colon cancer.

That's not the worst part though. The worst part is that she has advanced Alzheimer's, so she does not understand anything that's going on or that's happening to her, and she is in fear and terror because she's having to have so much done, and in such a strange environment to her.

They took her to the hospital because she almost passed out, and they found out that her hemoglobin was "5". They are giving her 4 units of blood, and blood has been found in the stool.

Today they did an upper GI to see and rule out if it is an upper GI problem. It was not. Not only has she had to go through this today, tonight she must go through the preparation for the colonoscopy, and the doctor has said that with that much bleeding and blood in her stool, that it's most likely going to turn out to be colon cancer.

The doctor told her daughter that after the colonoscopy they would talk about treatment, and her daughter said that no, there will be no treatment, after all, she is 76 and has advanced Alzheimer's...why put her through anything more?

My niece called me this evening and said that Mary Jo is absolutely just wild, trying to pull out IV's, trying to get out of the bed, and all the things that you might expect of a mind that is in terror and trying to escape it.

So I ask you this, my spirit family, please send peace and light and love and energy to my sister so that she may not feel such fear, and be able to see into the other world, and the peace and love will envelop her and allow her some rest on this earth, and some quiet time in her mind. This is my wish for my sister.

As above, so below,

Nafalia

mtnviewsteve
01-07-2009, 10:08 PM
~Bright Energized~Peaceful~Restful~Loving LiGhT Mary Jo & Nafalia~
So Mote It Be~

PMilam
01-07-2009, 11:09 PM
May peaceful energy surround her, and bring her ease, may her fear leave her, replaced by visions of the angels that are surrounding her.

Peace, Mary Jo.

Becky Davis
01-08-2009, 08:14 AM
peace mary jo..peace.

not me am i
01-08-2009, 10:06 AM
healing light on the way

DaBee
01-08-2009, 10:21 AM
Calm and ease, Mary Jo. Focused warm light upon your best next step.

celeste
01-08-2009, 12:05 PM
Wrapping her in a glow of love, light & angels' wings. Peace be with you, Mary Jo, My peace I give unto you.

lunarmist
01-08-2009, 03:35 PM
Sending loving light and visualizing Mary Jo experiencing calm and comforting peace.

Jeannie Jones
01-08-2009, 09:41 PM
Just read your posts to Nafalia, and she'd like to give you an update. Her words follow:

Mary Jo drank the whole gallon of Golitely last night, and that should have cleaned her out so that she could have had the colonoscopy done today, but it did not work because her bowel movements were still just as black as they could be. That means that there was a lot of old blood up in there, so they could not get her clean enough to do the test today, and her daughter said they were going to give her one glass of something to drink tonight, to see if that would help clean her out so they could get up in there and see where all this bleeding is coming from. So we won't know until tomorrow if they're even going to be able to do the scope.

Mary Jo is such a tiny little thing! She's about 5'3" and weighs about 105 pounds (probably less by now). She had her daughter call me today because she wanted to talk to me and make sure I was okay. In her mind, I'm still in the hospital with cancer the first time. Nothing she said made any sense at all, but that's the Alzheimer's.

I had to kind of smile at her though, because she said, "Well, this place has a lot of pretty stuff, but they don't know what to do with it.". I'm not sure what she was talking about, but it was kind of cute anyway. Her main concern was if I was okay, and I told her I was fine, and she said "Well, if you're fine, I'm fine". :wave:

They have been keeping her lightly sedated and her daughter said she's been pretty quiet and tranquil today, but was just beginning to start to get fidgety, so all we can do now is wait to see if she's even going to be able to have the scope done.

Her daughter said that after the 4 blood transfusions, her color is sooooo much better. Of course, when you have no blood and you get blood, you're bound to look better! She has no idea she's in the hospital, she just tells me, "I don't know where I'm at, and everybody's real nice to me, but they just don't know what to do with all these things they have around here". :confused:

So, spirit family, this is where we stand with my sister. As horrible as Alzheimer's is, there are still times when the patient says and does things which are rather humorous.

Thank you so much for sending her so much peace, and, if you're able and have the time, please keep doing so, and I will keep you updated.

As we will it, so shall it be,

Nafalia

JohnWalterM
01-08-2009, 10:44 PM
Bless you and peace and healing to her.

NRSG-U
01-09-2009, 07:38 AM
Peace BE with YOU and YOUR SISTER and your NIECE...
I know this must be rough for you...I will pray that she GOES in PEACE and Without pain....

PMilam
01-09-2009, 09:20 AM
Continuing to think of her and send her blessings of ease and grace.

MotherMoon12
01-09-2009, 11:12 AM
Peace, love, and light to all.

Jeannie Jones
01-19-2009, 05:18 PM
Mary Jo update from Nafalia, but paraphrased by me. MJ has had a very rapid descent into the full grasp of Alzheimer's. She has been in an assisted living community, not a 24-hr care facility, so her daughter has had to bathe her, dress her, and do anything else that needs doing. MJ does not know the meaning of "raise your arm" or any other simple direction, so it's been very hard for her daughter to deal with, being employed full-time. She seems to be no longer present within her body at all. Arrangements are being made for her to be in a 24-hr care Alzheimer's unit ASAP.

Nafalia, on the other hand, is doing quite well. She's back on solid foods and is eating a good variety of foods, though small amounts. You can hear her renewed strength in her voice, and it is truly music to the ear. She sends her love and appreciation to all.

Elizabeth Newman
01-19-2009, 06:08 PM
I am so glad your friend Nafalia is doing better. But the story of Mary Jo is just so gut-wrenching for me, because my aunt also has Alzheimer's, and she, too, has been in assisted living. I had to take her out of there a couple of weeks ago because my experience had become very much like you described the experience of Mary Jo's daughter (I'm the only person my aunt has) and now she is at my home in Fayetteville; but I'm not sure that I can do this for long, and I just wonder when I'll wake up and see that she has also entered the rapid descent into the last stage of this. Please keep us posted on Nafalia, and Mary Jo. You are indeed a gift to me at this time...

Jeannie Jones
01-19-2009, 07:31 PM
Elizabeth, you are very brave and of good heart to take your aunt into your home. My father had Alzheimer's for many years before his passing, and one thing I can tell you for sure is that they can be very active at night, occupied with bizarre activities. He would ball up his bedsheets "looking" for something he thought he'd lost, pull out his catheter so that he could get up and get to the bathroom, and hurt himself in other unintentional ways.

Your aunt may be fine and manageable for now. If she has a tranquilizer or sleep aid for the night, you'll probably do fine, but if not, the only way for you to sleep (eventually) will be to hire someone to be on watch all night, if that is possible.

Things to watch for: does she try to leave the house? Does she turn on the stove to try to cook, or possibly go to put a metal pan in the microwave? Know that you cannot watch her every second of every day, but if she doesn't do these things I don't want to put fear in your head needlessly.

This can be a very loving time for you and your aunt. Cherish any joy you can experience together, and delight in your ability to treat her with loving kindness. She may not be consciously aware of it, but I really believe that on some level the appreciation will be there. Also, the whole thing can make her very frightened, and anything you can do to allay her fears would be valuable.

One thing I forgot to mention in the Mary Jo update is that she has completely lost the control of her urinary function.

Jeannie Jones
01-19-2009, 08:34 PM
Current Mary Jo update from Nafalia. She's on the phone now and her words follow:


My niece, Carol, was called at work today by the assisted living care unit that Mary Jo is in and was told she was going to have to come and get her mother now, because Mary Jo was out of control and they could not handle her.


Carol has missed so much work that she called my oldest sister Arletta, and asked her if she could go over there and stay until she could leave work and get there, which would have been around 5:00 this evening. From what I was told, Mary Jo has gone over to the final stage of Alzheimer's and is in total terror, and is starting to become violent.


Just last evening my niece called me to update me on my sister, and said that she is just getting worse and worse by the day. Carol was working on getting her into a 24-hr care Alzheimer's unit. The new place here, called The Gardens, is a small unit and they get more personalized care. Carol has become well acquainted with the administrator of The Gardens, a lady named Connie, who knows all that Carol has been through, and she told Carol there was no opening at this time, and as far as she knew, there were no plans of anyone leaving, but, of course, this type of thing is a day-to-day thing. Carol really wants her mother at The Gardens, because of the way that it is run.


I don't know what will take place next, but I know it will have to be fast, because with Mary Jo being so out of control, it is no longer possible for her to be in anyone's home. I guess Carol will have to find an Alzheimer's unit somewhere and get Mary Jo in ASAP until an opening comes at The Gardens. I know this will be very hard for Carol, because she had her heart so set on that particular place, because the other Alzheimer's units are larger and more people there. I know, no matter how difficult it is, Carol will do what has to be done for her mother, as the bond and the love between her mother and her, is immensely, immensely strong.


When talking with my niece, Carol, last evening, she said, "I'm so stressed and so tired, and I feel so guilty every time I have to leave her", and she goes there every day to see my sister. Just the other day, Mary Jo got mad at Carol and hit her in the face with a hat. Carol said the look in her eyes is sometimes very frightening. And I know from having kept my mother when she had Alzheimer's that even the gentlest of souls, when living in the grip of the terror of this horrible disease, can become violent at any time.


I know there is sorrow and sadness in me and my niece and the rest of my family, as well as Mary Jo (if she was aware of it) and this may sound cold, but we all would want and ask that each of you pray and ask Spirit to release Mary Jo's soul from this body and let her cross over quickly and soon, for this is not my beloved sister, it is a shell walking around, hiding unknown fears and unknown reasons why it is happening to her. Let peace be with her, peace be in her, and peace be all around her. Thank you all.


Love,


Nafalia

mtnviewsteve
01-19-2009, 08:52 PM
~May LiGhT Surround Mary Jo~Carol and Your Family Nafalia~Allowing Peace and Comfort For ALL~May The Circle Be Unbroken~
~As Above~So Below~
:cool:

Coach 52
01-20-2009, 10:21 AM
We went through the same thing with my father. We were very lucky to find a place for him to stay. I realy feel for you. May God wrap his arms around you and your loved ones and bring peace to all.

Elizabeth Newman
01-20-2009, 01:13 PM
You are so kind to write to me about what I'm going through with my aunt. She never had children, and I lost my mother when I was 15, so we've always had a close relationship. The truth is that she has no one else, and I have been her only family connection (along with my husband and kids) for years. She has enriched our lives in ways that are immeasurable. Although she was diagnosed almost 5 years ago, we had a few years of struggle, of course, before diagnosis. I think we are still in shock, because she was really the center of our world. And she still is, but in a different way. She was truly an exceptional woman, and she was my mentor, and confidante, and the brainiest woman you've ever met.

I know that I cannot keep her at home with me much longer. She is also having problems with incontinence, and I am not really able to do everything for her she should have done. She was in assisted living until a couple of weeks ago, and she almost killed herself mixing fingernail polish with Ensure. We think she may have thought she was mixing a drink. I am looking at different possibilities. There is a place in Fort Smith called Willow Brook which has "memory care." Either I or my husband is supposed to go see it on Saturday. I don't know; I'm just sick about this. I so relate to Nafalia's feelings about Mary Jo: a release from this would be such a blessing, both for my aunt, and for my kids and husband and me.

Thanks so for listening. Anything more you can tell me about Mary Jo, and Nafalia and their plight will surely help me with my own.

Jeannie Jones
01-23-2009, 10:19 PM
I thank y'all on Nafalia's behalf for your kind words and energy for her and Mary Jo. I'll probably get her back on here in a day or 2 for an update.

Sorry to have left you hanging, Elizabeth, but this is the first I've been back here in a while.

Wow, I see the importance of your aunt in your life! It's so hard to see them, know that they're gone, and yet not be able to grieve, because they're still alive. Does she still recognize you sometimes?

There are many people on these bbs who have been in a similar situation or are experiencing it now. I'm sure all would agree that it's extremely important that you take care of yourself right now. Alzheimer's caregiving of a loved one can be so stressful that it's easy to lose one's balance, or at least teeter on the edge of balance of body, mind and spirit. Anything you can do to build yourself up in any of these areas would be helpful to you now.

I would be interested in hearing your impressions of Willow Brook.

Becky Davis
01-26-2009, 06:19 AM
Elisabeth, Your aunt is in very good hands and I am sure you will make the right decision when you place her. What a tribute to her. It is absolutely beautiful the way you talk about her. She must have been a wonderful person for you to love her so much.

Elizabeth Newman
02-02-2009, 07:49 PM
Jeannie - It was funny that you apologized for being unconnected for awhile, because I likewise have been unconnected. My computer died on Jan. 21, then the ice storm, and I am just getting myself back online. My aunt and I were in Fayetteville, alone, during the ice storm. The only thing that kept me going were our wonderful neighbors. I did go visit Willow Brook in Fort Smith, but I have decided not to do that. I am still in Fayetteville with my aunt, but my husband ditched his job in Van Buren, so we are no longer alone. Willow Brook is an Assisted Living I, but they have added a "memory wing." This just means that they have made an area secure. I had some trepidations about Willow Brook, but the issue was mostly decided when my husband decided he could no longer work for Experian ("Free Credit Report.com"). Now we will keep her here at our home until we can figure out something else.

She has a really interesting manifestation of the disease. She has a short term memory of about 10 seconds, but she knows me and my husband. Everyone else is pretty much gone from her consciousness, except for all her deceased relatives, who to her are still very much alive. She still has some capabilities, and she struggles mightily with other things.

I don't know what we'll do next, but ultimately, we want to be back in Eureka. We'll just have to see where life takes us. I would really look forward to hearing what's going on with Nafalia and Mary Jo. Hope all is good with you. Glad to be talking again. Sincerely.....

PMilam
02-04-2009, 07:03 PM
Prayers and concern for all that are dealing with this terrible disease. Both of my parents went thru it. Awful.. and fortunate that my sisters were able to care for her, until it was just too dangerous. One day, she walked outside, to the end of the sidewalk, and was completely lost, baffled when my sister told her it was her home.
No place was available to us that really cared for her the way we wished for her. She just wanted to go 'home'. She did not know where it was, only that her mother, sisters and brother were there.

My heart goes out to everyone that has it or loves someone that does.

Elizabeth Newman
02-06-2009, 12:03 PM
Thanks to P.Milam for words of kindness related to dealing with Alzheimer's. I have been looking at different places for my aunt to live. If anyone has any information about any of these places, it would be great if you could share it. I have looked at 2 nursing homes in Van Buren--Crawford County Rehab and Van Buren Rehab; Willow Brook in Ft. Smith; Brighton Ridge and Ridgeview in Eureka; Green Acres Assisted Living in Rogers, which is also a part of the Green Acres Lodge at Holiday Island; and a couple of places around Fayetteville. So far, I like the Green Acres approach. I went to visit their Easy Living house in Rogers, and I thought it was very nice. I wish I could keep my aunt at home with me, but I am just not sure that is best for her, and I'm pretty sure it's not best for me. I've had her here with me since Jan. 9, and things are going okay. Some days I feel as if I can stick with this for awhile longer, and some days I feel as if I can't do it another day. Such is this disease. Any words of wisdom are welcome.

DaBee
02-06-2009, 12:21 PM
Are you considering Green Acres Lodge in HI? I've heard very good things about the facility. If you are going to be moving to Eureka, that might be a good placement for you to be able to visit your Aunt easily.
You are a very thoughtful and loving niece to this special person in your life, Elizabeth. From what you've written, you have done the very best that you can do and my personal feeling is that you need to focus on yourself and do what is best for you right now. If you leave her in the hands of the experts, you can know that she is being taken care of properly and then when you visit, you can be your very best rested self with total focus on her during that time.
You have my wishes for only the best for you and your family.
deb

Elizabeth Newman
02-06-2009, 03:59 PM
deb - thanks so much for your note. The place I am leaning towards most is in Rogers, and it's called Green Acres Easy Living. It is owned and operated by the same man as is the Lodge at HI. HI is a Level II, and there is no doubt that we will be needing that level in the future. Maybe we do now; it's hard for me to tell. We are trying to sell our house in Fayetteville, and as soon as we do, we plan to relocate to Eureka; at that time, the Lodge seems as if it would be a good place. Right now, though, I'm looking for something in the interim, and I think this might work. You are right about what I need to do for myself; this disease has taken a toll on me. My fear is that if I only go see her two or three days a week, then she will forget who I am. And that is inevitable anyway, but since I (and my husband) are the only two people she really holds onto, we are--especially me--in a way her only identity. If I am away from her, then everyone is a stranger. But I know I have to do it. Thanks for listening. This is probably more than you wanted to know, so thanks again...

DaBee
02-06-2009, 05:59 PM
Elizabeth, this Gratitude Journal forum on Geekfest is here for those of us to talk of spiritual, heart felt matters. That's how I see it, anyway. The fact that some of us have become good friends through this forum shows that is it a vital and useful way to communicate. If you'll look back through the years, especially on a thread called, "Gratitudinally Speaking", you'll see a lot of us pouring our hearts and others receiving us with tenderness and friendship. This is a sweet place to go, even though a kajillion people could be reading it right now ;). I am happy with that thought because knowing that others can see our kindnesses to each other can only be a positive thing. That's the kind of heart stuff that heals the world.

Jeannie Jones
02-07-2009, 04:58 PM
Okay, finally back here again. Been very busy and tired, but at this moment I have Nafalia on the phone, and she would like very much to talk to you. Her words follow:

Elizabeth, I (and my niece) know exactly what you mean when you said some days you think you can do it and some days you think you can't go another moment. My niece called me last week and she was just happy and joyful because she said, "I did it! I did it! I finally did it! I can't believe I've really done it!"

What she had fought for so long and hard not to do, to keep her mother out of the Alzheimer's lockdown unit finally came down to having to be done. And she said, "I cannot believe how well it went and how easy it was to walk away and know that my mother was okay".

She took Mary Jo to an Alzheimer's unit, walked in with her, and said that Mary Jo was just as happy as she could be, that she was going around to everyone and saying, "Oh, I'm so happy to see you, I haven't seen you in so long!" Mary Jo thinks she knows everybody in there and that she's known them for years!

Carol said, "I was astounded at how happy she was to be there. I stayed for the afternoon thinking that when I got ready to leave, then the fight would be on, and it didn't happen!". When she told Mary Jo "Mom, I'm gonna go now", Mary Jo said, "Oh, that's okay, I have all my friends and family here. That's fine."

Mary Jo had 2 attendants assigned to her, and Carol told her that her mom smokes, and the attendant said, "Oh good! That will give me a good reason to go outside and have a cigarette with her."

Since Mary Jo has been in the unit, and with her love of dance, she's having a ball and others are dancing with her! Since Mary Jo came, the activities director decided that dancing was a good thing to start in the unit.

In this unit, they put an ankle bracelet on them, so any time they get near the door, the door automatically locks. Carol decided that she would not be taking Mary Jo out of the unit for any reason, because it only confuses her and makes her agitated. She's been there for about 2 weeks now and still knows who Carol and Danny are, and calls me once in a while and talks to me, knows who I am, and in Mary Jo's mind she's just in one big party, dancing with her friends.

Elizabeth, you see in reality, now that Mary Jo is among her peers she does not feel like anything's wrong, she feels secure and safe because everybody there is like her. Now as for Carol, she is relaxed, enjoying her life again, and goes and sees her mom every few days (not every day like she did before), and has finally been able to return to her life. Carol said, "I don't know why I waited so long and fought so hard, thinking I could make something better that will never get any better".

As you see, to be realistic about this disease is not to try and stop the disease, but to accept what the disease is going to do and be kind to yourself and merciful to your aunt and put her among her peers where things are normal to her, and get on with your life.

I hope this has helped you in some way to know that it's not the end when you put them in an Alzheimer's unit, but in a lot of ways, a new beginning for everyone concerned.

Peace be with you, peace be in you, and peace be around you,

Nafalia

PMilam
02-07-2009, 09:30 PM
Each of us is different.. and the way the disease is different, also. Mother didn't really feel that way, she only liked one woman, and gratefully, she was her roommate.
She was always sweet, and always wanted us to take her "home". Our last year or so was tough. She was our mom, yet she had a child like mind. Most of the time, it seemed that she thought of her daughters as her sisters. We seemed more the right age to be her sisters, certainly not her daughters. They were still young, with babies.

Just as each of our children became different people, in many ways, so do those affected by the disease.

Frankly, I hope that I never need to go there, but if I do, I pray that I will find myself surrounded by friends n family.. and we can dance and sing, til our hearts are filled. And our children can be happy, too.

I'm so happy for all of you to find the perfect place for Mary Jo.

Jeannie Jones
02-13-2009, 04:45 PM
Nafalia wants me to post an update here on Mary Jo's situation. Now she is no longer singing and dancing. Now she doesn't know who she is and is just sort of a blank...not at all animated. Her blood count is very low again, indicating internal bleeding somewhere. She will need a transfusion soon, but the family has decided not to keep doing that just to prolong the existence of the shell. Sad times for them. I'm sure any love/light/energy sent for a smooth transition would be greatly appreciated.

MotherMoon12
02-13-2009, 04:47 PM
Love, light and peace from here to all.

mtnviewsteve
02-13-2009, 05:08 PM
~Peaceful Journey Mary Jo~Healing LiGhT To Family & Friends~

PMilam
02-13-2009, 10:07 PM
It's good to know that she did enjoy herself for a while.
Blessings to all in this time of letting go.

artteacher
03-04-2009, 10:06 PM
(((((:happyheart::happyheart: and light to you and your family, Nafalia)))))

Becky Davis
06-10-2009, 07:11 AM
I am thinking of Nafalia and wondering how she is? Jeannie? Please tell her hello for me when you talk to her.

mtnviewsteve
06-10-2009, 11:48 AM
I am thinking of Nafalia and wondering how she is? Jeannie? Please tell her hello for me when you talk to her.
:cool:
~Sending Our Love & LiGhT & Best Wishes too~Blessings to you ALL~
:cool: