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Old 12-19-2009, 06:31 PM   #1
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Past year was a journey.

Hi, wishing you all a Merry Christmas and a Happy New Year.
I'm recalling a year ago when I had mom in my care and how difficult it was for me. She couldn't help it. At the time it wasn't clear what was wrong with her, so that made it extra hard on all of us because we couldn't understand why mom was behaving the way she was. Now over the year she was assessed & diagnosed and now that we all know it's not any easier. If I had to have her back in my home, I doubt that I would handle it any less stressed than I did last year?

Over the year mom has been through so many phases of dementia from being despondent to paranoid, dellusional to obsessiveness to withdrawing almost completely and then coming back in full force (several times) Now she is complaining about back pain, shoulder and arm pain and said she fell and is accusing NH staff of not looking after her. She thinks she needs 24 hr care and thinks she belongs in a hospital.. They have done tests and gave her cortisone but can't seem to find any problem and mom is saying the cortisone isn't helping.

Oh, it's been a hard year, I'm hoping for a quiet Christmas (mom is in a NH in another province this year, so my sister will be having her over for Christmas)

I was just asking someone today where the year went because I can't remember anything? I do remember that you were all there for me when I needed so my heartful thanks to all.
Feel free to share your journeys as well. Luv ya guys

 
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Old 12-19-2009, 07:12 PM   #2
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Re: Past year was a journey.

I also wish you each a very Merry Christmas and a wonderful New Year.. may next year be better for each of us.

A year ago I was traveling hours every other week or so, completely frustrated, and trying to deal with mom and dad in AL. Since then there was Dad's afib, delusions, wandering, a failed attempt to move Dad to a locked unit and then moving them both here. Then we had Mom in the Behavioral Unit and the horrible day that went with that, Dad's falling and excessive sleeping, but mom's disposition improving. We have separated them and put them back together. I have moved through the days one at a time and it's only when I go back and look over what has happened in the last year do I think I should have been overwhelmed but I had a great bunch of wonderful people here that held my hand when I needed it and kicked my bottom when I needed it. It has been a journey, an experience, and I have learned so much. Thank you all and I do hope you have a wonderful Holiday Season

Love, deb

 
Old 12-19-2009, 08:12 PM   #3
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Re: Past year was a journey.

One year ago -- a retrospective review

Okay one year ago, Mom was still here. In October, I stood my ground and not enabled sister to not realize the nightmare she was in by my interceding and I told her she couldn't dump Mom on my kids any longer. I demanded she get a nurse in for respite care instead of my kids (Mom's grandchildren). I didn't want my 24 yr. old son to have to wipe her bottom and such.

well, nursing assessor came in in November. Witnessed first hand my mother slapping, pinching, and punching my sister in anger because we were talking about her and she wanted the assessor to go, me to get out, and my sister to just deal with her.

Nursing assessor said 'your mother should be in a home'. My sister said she wasn't ready. they agreed to a nurse but said Mom needed to be sedated or they wouldn't come. so off to the doctor we went to get Mom a sedative. while there, all her meds were reviewed to see if they were truly needed. decision was made by doctor to stop everything -- and just deal with sedative.

Mom started to avoid taking any meds including sedative, so sister started crushing it up. November closed with a noticable difference in Mom's eating, swallowing pattern. December 2008 was here.

Mom was becoming more difficult. Christmas time celebration was okay for a hour or two, then Mom started getting agitated with sister and wanted to go home. she pitched a fit that sister was going to participate in annual acting and singing out the twelve days of Christmas. I held Mom from behind, continually talking in her ear to preoccupy her so sister can get through it.

I'd come home from work to find both Mom and sister in nightgowns and sister looking horrible because Mom would've give her a minutes peace to be able to do anything like washing up and getting dressed. this was becoming more and more difficult. Sister was not getting quality sleep, cries easily and keeps feeling like a failure where Mom is concerned. Sister finally admitted that she's ready to think about NH's for Mom but doesn't want to do it until after the holidays.

Sister once again felt guilty about possibly putting Mom in home. January, 2009 Mom stopped cooperating with eating well. She started to aggressively lose weight. she was taking sedatives to try to help with the sundowning so sister could hopefully sleep. I go down the shore with boyfriend, my daughter calls to say that my Mother fell during the early hours of the morning and cut her eyebrow. I chase down sister to learn that Mother was declared severely dehydrated, moved to another hospital and a social worker then calls me and tells me that they've documented my sister as an unfit caregiver and will not release my mother to come back home.

Mother was in and out consciousness -- more out of it than anything. Not eating, all curled up in fetal position. Five days pass, and I asked if the Living Will had been given in, nurse finally gets the document, Mom removed from IV. I ask for hospice to come in.

Hospice came in, started the process for placement. Hospice called demanding 8k up front (we didn't have). Sister started Medicaid placement, almost had Mom placed in a NH, Social Worker got involved and told them we wouldn't pay and bingo!, no nursing home would take Mom. EVERYONE ****** THAT WE HAD AN IRREVOCABLE TRUST FOR HOUSE AND ALL THE MONEY! TOUGH. Everyone started to give us a real hard time because they were frustrated by lack of ability to do anything to break it.

Lawyer stated we had to not visit Mom for 72 hours so hospital can declare her abandon. We followed directions and Mom was placed in NH. Sister visited each day, every day. I visited twice. Mom was not able to eat, Living Will directed nothing done to prolong life or delay death. She lasted about 2 weeks and finally passed on February 15th at 1:45 a.m.

she's at peace, we're at peace and now sister has issues that we are dealing with in order to get her back into a position to get a job. we are all okay and I know my mother is as well.

Merry Christmas to all and a Happy New Year. It's been an amazing year. I just hope that 2010 is a better year for a lot of us.

CaringSister54

 
Old 12-19-2009, 08:27 PM   #4
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Re: Past year was a journey.

Wow, I really feel for what your sister and you went through. You had to be hurting for two people, your mom and your sister. And how painful it must have been to her to be declared an unfit caregiver! When she had given all, and more, than she had in her to give. I'm guessing she wasn't able to take part in this wonderful group. But I'm glad you're here and I wish for your sister a reasonably fulfilling and reasonably happy life now that she has been given the chance to have her life back. I like the term "reasonably" because I tend to think in terms of all or nothing, and "reasonably" reminds me there can be quite a lot, without it needing to be all.

Love, JoJo

 
Old 12-19-2009, 10:26 PM   #5
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Re: Past year was a journey.

Deb and Caringsister, still my problems seem so mild in comparison to what you went thru and are still going through. Caringsister, I recall how you tried to knock some sense into me, it didn't always work but I did come around to understanding eventually. Your journey with your mom and sister was indeed a difficult one.

Deb you have been such a great source of help. You have 2 parents with the same problems and here I am going on about one parent, your experience and wisdom of words always came at the right time.

To the rest of you, lil Deb, Martha, Meg, and others, thank you.

You remind me that mom had her periods of nodding off to sleep at the dinner table and just about everywhere else, she had a hard time staying awake at the right time, or the walking around at night, or the shadowing, and the constant complaining of how unhappy she was. Mom is still complaining. Mom demanded 24 hour attention, yet wanted her meals and snacks on time and needed help with dressing and bathing, yet was unable to understand that there was more than her in the house and that I was burning out being there for her 24/7. She just couldn't understand.
Now I see this same pattern in the Nursing Home, they are there for her for everything but to mom it isn't enough. At first I was doing everything in my power to hold unto mom, but in this past year I've learnt that the kindest thing to do was to let go and have several people and resources look after her needs. Had we kept her under our care, I don't think my strength would have held out. Don't get me wrong I'm speaking for myself, not everyone is able to do it, but there have been some very strong and faithful caregivers on this board that were able to look after their dear ones and hold out till the very end. I commend them, I couldn't have done it but they did.

Last edited by dorri; 12-19-2009 at 10:29 PM.

 
Old 12-20-2009, 05:19 AM   #6
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Re: Past year was a journey.

dorri

Your comment that you had to learn to let go of mom and let others take care of her needs. That is most likely one of the hardest things we all have to do at some point is to let go and let others do.....

love pauline

 
Old 12-20-2009, 05:45 AM   #7
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Re: Past year was a journey.

To all my caregiver friends,

Now that mom has past away,I revisit my mom's past journey often over and over in my mind almost on a daily basis.. I find myself thinking, wow a year ago today she was doing this or a year ago she was doing that... but now she is gone.... I keep making those comparisons on a day to day to basis.

Myself, dad and I and especially my mom went through so much the past year. So many changes.. Some very bad experiences, some very positive experiences.
The one thing I know for sure throughout everything, the one goal in mind was to make sure my mom had the very best care possible. She deserved no less then that. That is why in May after she fell at home and fx her hip and the Rehab facility met with dad and I told us out right that mom had had 6 admissions into their facility since 2006 for all different medical reasons. We knew it was time for Long Term Care. I remember that day just like it was yesterday. I remember having a very bittersweet feeling inside. I remember feeling grateful that other people trained in the field will look out for mom's safety. I remember feeling sad that mom will not come home to her own home again. That part made me sad only because I knew how very much her home meant to her. She loved her home.......

I do know that up until the day she passed away October 22nd 2009 she knew I loved her very much... She knew that I did the best I could with taking care of her. She appreciated everything I always did she told me that all the time...
Yes, mostly my dad says he wishes he just brought her home with hospice but I often remind him that hospice does not offer round the clock care we, him and I would of had to do so much. I often tell him we can sit here all day and say we should of done this or done that .......... We have to know that we did a terrific job doing what we did with some one that had so many comorbities along with the Dementia, and not to second guess ourselves...

It has been two months since mom passed away but I am still regoruping from all the years of caregiving. It takes a toll on you that you have no idea while you are doing it, because everyday you wake up with one mindset and that is the needs of that person and that is all you think about or do. When it is all over and done you sit and think to yourself how the heck did I do all that!!! I am trying to build myself back up mentally, physically and emotionally from it all. It is a process that will take time afterall I was a cargiver for so long... If asked if I would do it all again??? For my mom Yes, I would ......

Love pauline

Last edited by polina; 12-20-2009 at 05:47 AM.

 
Old 12-20-2009, 05:48 AM   #8
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Re: Past year was a journey.

Quote:
Originally Posted by dorri View Post
Deb and Caringsister, still my problems seem so mild in comparison to what you went thru and are still going through. Caringsister, I recall how you tried to knock some sense into me, it didn't always work but I did come around to understanding eventually. Your journey with your mom and sister was indeed a difficult one.

Deb you have been such a great source of help. You have 2 parents with the same problems and here I am going on about one parent, your experience and wisdom of words always came at the right time.

To the rest of you, lil Deb, Martha, Meg, and others, thank you.

You remind me that mom had her periods of nodding off to sleep at the dinner table and just about everywhere else, she had a hard time staying awake at the right time, or the walking around at night, or the shadowing, and the constant complaining of how unhappy she was. Mom is still complaining. Mom demanded 24 hour attention, yet wanted her meals and snacks on time and needed help with dressing and bathing, yet was unable to understand that there was more than her in the house and that I was burning out being there for her 24/7. She just couldn't understand.
Now I see this same pattern in the Nursing Home, they are there for her for everything but to mom it isn't enough. At first I was doing everything in my power to hold unto mom, but in this past year I've learnt that the kindest thing to do was to let go and have several people and resources look after her needs. Had we kept her under our care, I don't think my strength would have held out. Don't get me wrong I'm speaking for myself, not everyone is able to do it, but there have been some very strong and faithful caregivers on this board that were able to look after their dear ones and hold out till the very end. I commend them, I couldn't have done it but they did.
I am so sad for all of you and those you have loved. It is so hard to witness these episodes especially when there have been good days and bad--We want to desperately keep that love and this support is so needed. I've been talking with a friend whose Mom has had her bouts and is on Aricept--she is 70 and she has provided in the past to have Assisted Living. Blessedly, she has not fought it too much and she has made friends of the same ilk in the Home --her daughter is more relaxed these days knowing that her Mom is adjusting to this decision. It truly is a difficult one to make because we all know that they would be happier in their own homes, so that is a biggie and then you have something happen to you when all control is taken away and Mom's wishes cannot be met and you know that she would not want you to be destitute because of her---back and forth--How can you live your own lives? What a bummer, I will not accept Aricept--frequent urination, dizziness.
What else is happening that we do not know?

 
Old 12-20-2009, 06:43 AM   #9
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Re: Past year was a journey.

Yes, 2009 was quite a journey.

This time last year, I'd just placed my wife in the nursing home. Going twice a week to visit and make sure she was being cared for correctly. Seems like every visit she'd declined so much.

Betsy died at the end of March of '09, and it was such a relief when she finally slipped away. Then my mom died 3 days later, quite unexpectedly. I find that I have very little left in the way of emotion. A friend said at lunch the other day that I'd obviously been going thru the motions for a long time ( and i thought I was covering it up quite well ) .

Then there has been the drama of dealing with my brother and His wife over my mom's estate. Really? Haven't we been thru enough this year?

It's been interesting learning how to be single again. To be a single parent of a 16-year old daughter. Trying to figure out why the old friends have disappeared, but grateful for the new ones that have taken their place.

In trying to decorate for the holidays, I'm reminded over and over, when I find certain ornaments or whatever (even found an anniversary card from several years ago) how much has been lost in such a short time. And how small my circle of people I care about is.

But. 2010 WILL be a much better year.

Love to you all, and thanks for being there for me and so many others who will be finding you.


Kenny

 
Old 12-20-2009, 06:49 AM   #10
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Re: Past year was a journey.

Jo Jo

My sister and I are like a keg of dynomite and a fuse when we're in a room together. its been that way all our lives because in the same sentence my sister could get away with something and i'd get a beating of my life for a less minor infraction. I always told people she was the good seed, I was the bad seed -- as an adult -- only now can I see why it happened. Maybe if i recognized why, I would've been able to talk with my mother and try to get her to understand what is behind her actions but by the time I knew why she did the things she did to me, she was already in her la la land.

Watching it all was heart-breaking especially for me to see the 'badge of courage that my sister chose to wear'. In my old way, i do love both of them but its been a difficult love.

My sister is just like my mother in every way. She's bitter, she's nasty, she can't tolerate any minor or major change in her life well. i took her to the doctor this past week, she got a diagnosis of glaucoma and the fit she pitched in the waiting room was unbelievable. Thank god we were there only with one other person. Unfortunately the woman tried to help to say, its okay, they're give you drops and that's it. My sister jumped at the lady and said "but they can't cure it!!! why can't they cure anything anymore! its because all these doctors want to suck you dry of your money". My sister has no medical insurance and the visit cost her $600. When i said let's put this in perspective, they didn't tell you, you had cancer. She freaked and said, it might as well be. She's so dramatic. But she had a blessed life. She was hardly and I mean that -- hardly sick. She never went to doctors unless it was for a cold. That's it.
I had problems with woman plumbing, but not her, etc.

But Jo. I have guilt that I could help her more. First of all my mother didn't want me around and screamed bloody murder if sister went out and left me there. Secondly, my sister made me feel like crap because I couldn't do some of the things or wasn't doing somethings right but it was also compounded because my sister didn't leave me proper instructions before she ran out the door. She never planned her escapes, she just grabbed a coat and ran!

As an observer to this caregiving, my sister couldn't do anything better for my mother. My mother was handled with love and compassion and the sweetest care. She was washed, dressed, wig on, teeth in, etc. everyday except for those difficult days when mom would fight her tooth and nail. And no, my sister shouldn't have been treated as she was in the end by hospice or the Social Service worker at the hospital, OR by the damn Medicaid group like they did. Those saying nasty things, got to go home at night and escape the nightmare, we however lived in it 24/7/365.

So I chose to support my sister, and let my sister support my mother instead of having two deal with doctors and then arguing about what we each heard or how we heard it. It made it easier for my sister. it sounds like your sister is chosing this track too. Love her for it. if she told you what you should be doing and not doing -- from a distance, it would add so much to your stress.

it was hard. i still cry over it. The reason why my sister didn't seem to use this site is she was not thinking clearly . She did come here and read stuff but she always felt -- that's not the way it is hereor that happens only to "THEM". Or she'd fool herself and say Mom isn't doing that stuff (but she was). She use to argue with me that 'those people don't have the same issues we do" (but she was wrong, we did).

So that is an outsider's point of view to the nightmare. I don't regret the way it went, but I do feel guilt sometimes that my mother and I couldn't get pass her lack of love for me.

Love to all

CaringSister54

Last edited by caringsister54; 12-20-2009 at 06:56 AM.

 
Old 12-20-2009, 10:20 AM   #11
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Re: Past year was a journey.

merry christmas to you. i am sitting here crying because i too was thinking about this past year and what my mom was doing. i dont know where the time has gone. i miss her so much. time does heal, but the holidays are difficult.

 
Old 12-20-2009, 11:44 AM   #12
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Re: Past year was a journey.

CaringSister, I appreciate your openess and sharing about the family dynamics. So, it wasn't as simple as I had imagined, but what you've shown me is that no matter how convoluted or complicated our relationships are to each person in the family, there is still love, even as you say "difficult" love, and it hurts to see other family members hurt.

I imagine if my brother had lived, our relationship during this time would be very complicated and full of baggage from our childhood. In a different way because all families are different. Right now I think he would be going after all the money he could get. He died owing mom and dad over $16,000 and they were supposedly in their right mind when they kept loaning him money that was never paid back.

My sister is 13 years younger than me, and was only five when I got married and left, so there was none of the sibling interactions with our parents that usually shape the relationship between brother and sister. I'm not sure how well we would have worked together on this if she still lived in Indianapolis, but I really appreciate her attitude that since I'm the one here dealing with it first hand she supports whatever decisions I need to make. And she too doesn't seem interested in using the support here. But I have her to thank for suggesting that I find some support group on the internet, and here you guys were!

I will never forget the long talk I had with my mom, probably two years ago, where we discussed my childhood and the things that I thought were painful. It was very healing for both of us, and might not have happened if I hadn't been living here - the opportunity, timing, need, etc. wasn't necessarily something that could have been planned and scheduled. I had no idea at the time that would be my last opportunity to have that type of discussion with my mom, and I am so thankful that it took place - and that it was complete because like you say, she's kinda in la la land right now.

Bless you CaringSister!

Love, JoJo

 
Old 12-20-2009, 08:18 PM   #13
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Re: Past year was a journey.

I am so blessed.
Blessed to have the parents I was born to..
Blessed to have the brother/best friend that I have.
Blessed to have a supportive family to hold my hand and my head and my heart as I walk through this journey with my mom.
And blessed to have you all here to share your lives with me and to have you all here waiting to hear my tales of woe. Tales that are unfortuantely the same as yours.

This past year for me seems to be a blur.
Every Christmas, for the past several years, I have wondered where we will be NEXT Christmas in reference to my mom and her disease.

This year she is more vulnerable than last year.
This year she remembers less than last year.
This year she needs me more than last year.
This year I love her more than last year.

The most important thing I learned this past year is to not give into the disease. To fight it. To be proactive.
Twice this past year mom had major emotional difficulties arise that were handled with medication that made her life somewhat more pleasant and tolerable again. If she were still in the hands of my beloved late step dad she would still be in those awful places waiting for the next scheduled appointment before it would be dealt with.. if it would be dealt with!

We are still holding our breath that this latest episode of forgetting her husband's death, and how it is affecting her, is being handled by the new medication, but we are now into our 7th angst free day. Yesterday, Saturday, was her first laughter filled day. Yesterday, she sat in the lobby of her "home" and sang with the visiting Baptist church, the Christmas songs she learned as a child.

I also learned that this is emotionally a killer to caregivers and without periodic breaks and outside interests we are doomed to wallow in the despair this disease spits out at you.

In talking with her doctor a few weeks ago, he warned me that the worst is yet to come. I know it. I dread it. I fear it. I wake up every morning thinking/worrying about what the day will bring. And with your help, I will handle it somehow.

So, to all of you, I thank you for all for standing by me this past year. Let's hope the best for all of us in this new year to come. A lot of it won't be pretty but together at least it might be tolerable.

Caring, I must direct this to you. How your mother loved you had nothing to do with you, but all to do with her. She did the best she could, though it was not the best for you.
Your validation comes from who you are, not by whom you were loved. You are a wonderful, caring woman, One we all value and revere.

Love, Meg

 
Old 12-20-2009, 11:43 PM   #14
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Re: Past year was a journey.

Diane... Meg is absolutely right!!! Your value, validation, and worth comes from who you are and what you do with what is given to you, not who loved you or what you were given. It takes a big pile of lemons to make lemonade.... but how sweet it is when you are done

Love, deb

 
Old 12-21-2009, 05:53 AM   #15
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Re: Past year was a journey.

Believe me -- even though I document here things about my life. I have had it pretty good. First off, I became a mother's helper. She had a 2 year old son and then 2 years later had a daughter who I started taking care of when she was 2 days old so I always feel that I raised two kids before ever having my own. I had a babysitting business that had 8 families and New Year's Eve, I'd combine all of them at one person's house and they all got their nights out. I was blessed by the unconditional love I still get and have with all these kids. I've seen them grow up and have kids of their own and a few have said they're raising their kids in the same thoughts that I had raising them.

I also had a friend who I thought was my best friend but it turns out she was just a childhood friend who I was blessed to know and her mother knew what was happening in my life and use to come up with one excuse after another to have be stay at their house. My Mom didn't like this woman but there wasn't too much she could really come up with to keep me away from her. My Aunt Della was my on-earth guardian angel. She's in heaven now but I loved her with all my heart.

so while I share my background with those on here, its more to explain why I write as an observer of human nature and things than from the experience of a wipe their nose, cook for them, change them, put them to bed and worry about them caregiver.

But thanks or all the kind words from everyone. Let's continue to care about each other.

CaringSister54

 
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