It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-28-2008, 05:02 PM   #1
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: USA
Posts: 1,301
mary09 HB Usermary09 HB Usermary09 HB User
An update from me.....

Hi Ladies...
Been a little while since I posted.......
Well, mom and dad just got back last week from seeing grandma. Mom says she looks like she has really gone downhill since she saw her in June. Psychiatric doctor that is somewhat looking after her, came out for a visit while mom was there, and said she is "declining rapidly". I am so saddened by this, but not surprised. Mom was so reluctant to go, and yet, I feel a little of the stress is relieved when she is there, simply because she "is there", and not 3000 miles away. So now we are back to the stressful long distance calls and all the anxiety that comes with it. Grandma goes sometimes a day and a half in a very deep sleep, cannot wake her out of it. Hard of course then to get any food or liquids into her. When she wakes she is extremely aggitated, screaming constantly......how I hate this illness, I really do.
I am torn these days my friends....it has been 2 years since I saw my grandma....and I wish I could see her one last time. I did suggest to my mom that we go again in November, but I would have to take my son with me, and I dont think that would be a good idea. Plus we wouldnt have anywhere to stay, and it would not be a good idea for me to stay in the same house with her, and my son together, I think it would be too frightening for him. Mom supposedly agrees, so I've left it at that.
I find my thoughts wandering to what happens on the day that we receive "the call".....the call that we have been dreading. Do I travel 3000 miles for the service? Part of me knows I should. Besides the fact it will be hard for me to figure out what to do with my son for that time.....I admit I am afraid to go.....afraid to face the sadness and grief, and also for the inevitable upset and anger that will explode between my family members.
Tomorrow is my first ultrasound.....and I should be feeling happiness.......yet today I am feeling all sorts of emotions. I just dont know what to do. Would it be wrong for me not to go? Would it mean I dont love her anymore? I know that's not true....but I know in my heart my mother would always hold that against me. At the moment, things are very tense.....mom struggling with guilt I guess of being far away, and as always, I am a very convenient way to release some pent up emotion. I asked her today how grandma is today, and she says "well, she's dying, what can I say?". Really sharp.....I know this is the case.....and my heart breaks for that....but she's not the only one who loves her. I thought it was kind of cold the way she said it.
I am so mixed up........I hate this disease so much.......from 3000 miles away it suffocates so much of my days and thoughts.....
Sorry for being so down friends....it's been a long day.
Love, Carsam xo

 
Sponsors Lightbulb
   
Old 09-28-2008, 05:55 PM   #2
Senior Veteran
(female)
 
Join Date: Apr 2008
Location: Denver Co USA
Posts: 664
skimps46 HB Userskimps46 HB Userskimps46 HB User
Re: An update from me.....

First of all, I must tell you that I am JAZZED to have you back on the boards, Carsam. Totally nice to see you again! If only it could be a board where we were discussing new babies, or puppies, or spring flowers...

It's a tough spot you are in. Nooooo doubt about it. Yes, you are quite right - mom is not the only one that loves grandma. You need to be validated on that. This is hard on you, too. And I see the anguish.

I admit that I am not the one to ask the "should I go for the service" question. I have a really odd and unpopular opinion on that kind of thing. My family is under the following instructions (for my eventual demise): No funeral, for the following reasons: 1) It would be just my luck to have no one show up. Story of my life. So don't embarrass me one last time. 2) It costs a ton of money. We don't have any money. Don't get a loan. That's dumb. 3) Funerals require flowers (if you want to give me flowers, do it NOW while I can enjoy them), new outfit for the deceased (likewise, if you wanna buy me new clothes, do that NOW, too), and an overpriced, ridiculously overadorned casket. If I am "gone", then I am gone. What is left of me is just the house I used to live in. And finally, funerals make grieving people decide, in the worst possible period of time, decide whether to take time off work, board the dog, find sitters for the children, find something to wear and use the credit cards to finance a trip across states to attend. No thank you.

So here's my weird "take" on this. You love grandma. We all know it. Really. There is no doubt in OUR minds - and I would bet there is no doubt in grandma's mind, either. When she remembers who you are, that is. And if you ASKED grandma what she'd want you to do, she would no doubt say, "Honey, you take care of your son, the baby you are expecting, and your other thousands of responsibilities. Don't fret about me."

Don't you agree? The best testimony you can give is taking care of you, your children, and enjoying the wonderment of a new baby growing inside of you. I don't think that's cold. That's necessary. And grandma would agree, carsam. I am a grandma. I know.

Peace...

...little deb

 
Old 09-28-2008, 06:21 PM   #3
Member
(female)
 
Join Date: Aug 2008
Location: Rixeyville VA USA
Posts: 85
quetzalmom HB User
Re: An update from me.....

Lil' deb is so smart. There are only two valid reasons to travel 3000 miles..if your grandma would derive some comfort from it (which doesn't sound likely from you posts) or if you would derive some comfort from it. A memorial service cannot aide the deceased, it exists for the living, Go if it helps you, if you would be just as comforted by a day in the park with your son, do that and recall what memories you have of good times with your grandma, they must be many or you would not agonize so. I'm sure your grandmother would want you to rejoice in your child to come. Her next great-grandchild! This is what all of us want to live after us. If she could communicate with you, wouldn't she feel joy in all that is good about your family continuing on? I'm sorry to ramble so, but your hope in the next generation is the walking cure for grief at the inevitable end we all come too. Embrace and enjoy it!
In my prayers,
Q

 
Old 09-28-2008, 07:04 PM   #4
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: USA
Posts: 1,301
mary09 HB Usermary09 HB Usermary09 HB User
Re: An update from me.....

Hi Lil Deb and Q-Mom...
Thanks for your kind responses....(as always).
If only my family could be as understanding and think the way that people on this board do......I'd have so much less heartache.
I will admit to my dearest friends here.....that I dont "want" to go to this funeral. If it was here where I live, of course I would be there. But I am scared to go....scared to see my family......but also want to pay my respects and support my mom.
My mom I know is happy about my having another child, but sadly neither this child on the way, nor her 4 year old grandson, can take her from the misery she is living. I admit I get angry about it. Angry that for a few moments we can not for heavens sake not think about this "illness"...and what it's done in our family. My family dont seem to think that a new baby and "children"...are the new "life" I guess if you call it. But are more settled in the misery of losing the older generation. I am full of bittersweet emotions tonight......bitter that none of my family, (mom, aunts) had to deal with any of this when they were my age and trying to raise a family. Everyone was healthy. There was no dementia, no cancer to worry about. But I am surrounded by all of it......and struggling desperately to give my son a life free of doctors, and medications, and talk of nursing homes and family squabbles.....I just want some peace. I want my mom to put herself first for a bit...to put "us" first for a bit......that sounds really selfish I know.
At the same time....my heart breaks for grandma and uncle........the whole situation just plain stinks...you know?
thanks ladies again...
Carsam xo

 
Old 09-28-2008, 07:22 PM   #5
Senior Veteran
(female)
 
Martha H's Avatar
 
Join Date: Dec 2004
Location: Middlebury, IN
Posts: 4,695
Martha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB User
Re: An update from me.....

I feel exactly the same as Skimps (little Deb), and, as I am older, my kids already have it all in writing. They can hold a nice memorial service at my church. No expensive funeral, casket, stone, flowers etc. Cremation, and scatter my ashes somewhere. Any child or grandchild who cannot come for any reason (like a pregnancy!) is automatically excused.

Fact - some of the people who attended Mom's funeral were the very same ones who ignored her all during her long bout with Dementia.

She would have loved their visit, flowers, phonecalls, candy BEFORE.

Caroline, you should not even think about going.

Love,

Martha

Last edited by Martha H; 09-28-2008 at 07:25 PM.

 
Old 09-28-2008, 11:43 PM   #6
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,177
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: An update from me.....

I am in complete agreement. I have already told my daughter that I want to be cremated. No casket, no service to cry through, and no boring receiving line. If you want to see me, do it now. If you want to send me flower, do it now. When I am gone I want a true celebration of my life. Take my ashes to the beach, have a party, and leave me there where the waves wash the beach. Be happy that I was here..... not grieve because I am gone.

Carsam, You Mom is obcessing. You don't want to do the same. You have a son to worry about. You have an unborn child to worry about. You have yourself and your hubby to worry about. You have enough to worry about. I know you love your Mom and hate what this has done to her but don't let it dictate your life. You know you love your grandmother and she knew it. You Mom knows it also. If you chose not to travel 3,000, pregnant with a young child, then that is your choice. It is difficult to stand up for yourself, and you might take some flack for it, but you need to do it. No amount of worry is going to fix what your Mom is going through. Nothing you can do will make it better for her. Deal with it when you have to..... and then put it aside for the sake of YOUR family.....

Love, deb

 
Old 09-30-2008, 09:50 AM   #7
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: USA
Posts: 1,301
mary09 HB Usermary09 HB Usermary09 HB User
Re: An update from me.....

Thanks dear ladies.....
You always put things in such clear perspective. I am trying to distance myself a little from what I cant change, and accept that....but it's hard. My mom lives two doors down and is "very" involved in my life. She watches my son every other day, so it's practically impossible not to get drawn into the every day aspects of whats going on. I am 3,000 miles from grandma, and can tell you what she did and did not eat yesterday, the day before, and the day before that. I hear every detail. I know every medicine.....every sleepless night. Just as my uncle has no one to talk to, so he unloads everything on my mom.....then she in turn does the same to me. It's hard not to be supportive.
Does anyone know if these "deep sleeps" or a sign of the end of this illness? I figure she sleeps so much at a time because she goes 3 or 4 days without sleep and so her body catches up.....I dont know how her poor little body is managing physically but I know it's her mind that is driving everything.
I feel like no matter what good or bad come in the day, everything is overshadowed by grandmas condition. Everyone's mood is dictated by it. It's hard. It's like a domino effect. If its a screaming, hallucinating, no sleep day....things here are tense and bitter. If she ate a little and slept a bit, there is 5 minutes of relief. This illness has such far reaching impact, it's ridiculous.
Anyways, thanks again ladies for listening to me. I dont know what I'll do when the time comes. Dont know if I should go and visit her now......if I dont, I will probably have that thrown in my face later. I couldnt take that because I've always been so close with grandma. I'm just so confused.
Therefore, this is the place for me to be, huh?

Love, Caroline xo

 
Old 09-30-2008, 01:39 PM   #8
Veteran
(female)
 
Join Date: Feb 2007
Location: Adrian, Mi. USA
Posts: 445
petal*pusher HB User
Re: An update from me.....

Caroline...I can hear your sadness in your post.

You have a wonderful new life depending on you for survival...and the rest of your little family also! Your Grandma....that Grandma "that used to be"...KNEW you loved her very much! That little Grandma is no longer there...even tho she resides in the same body...so much has ravaged her mind.

I'm afraid if you traveled to see her now...the sadness of what you'd find would be terribly overwelming. You've done your part! You're listening to a saddened Mother who also feels guilt for being so far away...and I bet your Mom wishes things were different so she could rejoice with you about how your life will be changing!

Keep the good memories near...and don't feel guilty for being here and trying to continue with your life...that's as it should be.

When my own Mom does pass...I certainly do not expect my daughter from accross the country to come home. She has wonderful memories....and that's what Grandma would want for her to cling to.

Keep posting here...we're all in close reach and have soft shoulders. Take care of yourself...................love, Pam

 
Old 09-30-2008, 05:08 PM   #9
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: USA
Posts: 1,301
mary09 HB Usermary09 HB Usermary09 HB User
Re: An update from me.....

Thanks Pam....
I'm really comforted by your message. I wish so very much my mom could see things the way you and the other ladies do. All of you have such a wonderful way of looking at things.....I hope your children all realize what wonderful mothers they have and have lucky they are to have you. With my mom, it's all or nothing. I think because grandma is suffering so much (and god bless her, she "is" suffering)....I think she almost has gotten to the point where she feels guilty if "she's" not miserable also....does that make sense? I think she also is trying to fill a void that her 3 sisters have left. That's an impossible task, as I've told her....you cant fill the shoes of another sibling. Grandma has a separate love for all 10 of her children.
One thing I truly believe is that her dementia was triggered by the loss of her two sons (to cancer).......she really started going downhill. But I think the loss of her 3 daughters has effected and hurt her more, knowing they are only 5 minutes away and wont come see her. That is harder to accept, in the rare and fleeting moments where she can actually "remember"...you know? So sad....just so sad.
I'm trying so hard to be positive....to relish all that's good in my life.....sometimes this dark cloud just gets on top of me, so I thank God for each and every one of you here who help me look past it and find the ray of sunshine.
Love you all,
Caroline xo

 
Old 09-30-2008, 05:13 PM   #10
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,177
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: An update from me.....

Pam is right Caroline. Beyond that you need to learn to lay down the burdens your Mom put on you when you leave her door. I know it's a struggle but it will serve you well. I listen to Mom's rants, I listen to my baby sister's rants, and then I find something different to do that keeps not only my hands but my mind occupied. Stick the ear buds in my ears and sing while I iron or find a good book. I call my daughter and talk about anything else but the situation with my extended family. You can't fix what is wrong, you are an excellent daughter and grand daughter for listening and caring, but don't carry the weight of what you can't fix in the forefront of your brain all the time. It's a learned behavior

Love, deb

 
Old 09-30-2008, 05:24 PM   #11
Senior Veteran
(female)
 
Join Date: Jan 2007
Location: USA
Posts: 1,301
mary09 HB Usermary09 HB Usermary09 HB User
Re: An update from me.....

Such wonderful advice Deb........when you mentioned how you call your daughter and talk about something "else".....oh how I wish my mom could do that!!!
Lay down the burdens when I leave her door........that sounds so wonderful. You know what Deb? I think my issue is that I've been "picking up those burdens" all my life. I'm 39 now. It's a hard habit to break and I imagine has to be what you say, a learned behaviour. This situation has just made it so much harder because there are so many emotions involved. I'm also very much the kind of person who cringes under any sort of confrontation....it stifles me to be honest. So I guess I'm trying to balance a whole bunch of personal issues here also......if I could figure out how to do what you're saying......oh Deb, I'd be so much better off. I am trying these days to shut my mind off.....it's hard....but I'm trying for the sake of my own family. With all the encouragement I receive here, and all of your amazing experiences to draw on......surely I will find the courage to do what I have to in order to find a little peace. Thanks for saying I am an "excellent daughter and granddaughter".....those are words I never hear within my family, it is nice to hear them.....

Love, Caroline xo

Last edited by mary09; 09-30-2008 at 05:24 PM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Pterygium *Update* pingsrgone Eye & Vision 13 05-31-2011 04:52 PM
hormones and diet, my story...update #5 idealist Acne 5 10-22-2010 04:15 AM
Update on surgery...Horrible PM nurse Brosiah Pain Management 7 08-20-2009 02:44 PM
Update and meds change..... one2wonder Thyroid Disorders 3 05-18-2009 08:43 AM
My experience (no actual dx right now) thoughts?? Stormangel28 Fibromyalgia 6 08-25-2006 10:34 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:05 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!