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Anticipatory Grief - This is the worst thing yet!!!  
Started by Razz
08 Aug 2015, 2:39 AM

The basics are:  93 yr. old mother with mild to moderate dementia, COPD and some weakness on one side.  Has a long history of TIAs (mini strokes).  Has steadily gone down hill since my brother passed away in Nov.  She stopped eating and basically decided that if it was her turn to go then she was OK with that.  Had Home Care in for a few weeks and that was a nightmare.  They did their best but she needed 24 hr. supervision.  Ended up getting her admitted to hospital and from there we were very lucky to get a bed for her in Long Term Care.   Once admitted to the hospital she became totally incontinent. 

She weighed 68.4 lbs when she went into hospital.   I've been very upfront with everyone that she does not want any "life sustaining" measures ..... we are going for quality here not quantity.  Her dementia did get worse as she didn't seem to be aware of her surroundings and on one occasion mixed me up with one of the granddaughters.  

She did seem to connect the dots when she was moved into the Care Center.  We had had a number of "talks" about moving to such a place because of her needs and she said it didn't matter.   The Care Center has been very good about her/our wishes and are doing their best to give her the foods that she will eat, pushing things like Ensure but it's her choice to have it or not and generally letting  her decide.  Some of the staff were co 

When she lived on her own at a Seniors Lodge I was beside myself with worry as so many things were getting missed.  I ended up having to be there everyday because of all kinds of different messes she would make and there was no one whose job it was tto clean them up.  It was a nightmare as I'm sure many of you can identify with.  So...... you would think that now she is in a safe place where caring people are keeping watch over her 24/7 I would be doing the "happy dance".  Take a deep sigh of relief (and I said many prayers of thanksgiving over how smoothly everything went for us).  Instead I seem go be falling apart.  Since her first day there I've been on the verge of tears or just breaking down.  It's been a few weeks now and I'm still no better. 

I sat with my father for 4 days (keeping vigil) when he passed away almost 30 yrs. ago... my job then was to take care of my mother so I didn't really grieve that loss until a couple of years later.  I sat with my mother-in-law while she was pallitive for 3 weeks and that didn't hit me like this.  I had the opportunity to see my brother for a few days before he passed away and it was a wonderful and loving experience.  I felt a great sense of peace during the time I was with him.  There is no sense of peace for me right now and I am constantly second guessing myself when asked about different things the care staff want to try with what seems to be a goal of getting her "better".   She is NOT GOING TO GET BETTER!  

I couldn't figure it out and did what I always do when I'm confused by something ... I hit the internet.  Sometimes I get lucky, sometimes I don't.  This is how I learned about Anticipatory Grief and I have all the symptoms.  At least I have a name for what I'm feeling but that is small comfort.  

Basically I'm watching my mother die by degrees.  She has good days and bad days but for the most part she is totally complacent.  She's compliant with the staff although she does keep taking off the oxygen they give her because her stats are so low.  I would have said to stop the oxygen but she seems to be handling that situation in her own way just fine.  The dietician called me with the idea of moving her to the "feeding" table - which I flatly refused.  She can feed herself with no problems ... she just doesn't want to.  I think the dietician finally understood (as talked to her through tears) that she is cognitive enough to make her own choices and even if she wasn't she made them clear enough back in April when this downward spiral started.  I feel it's important to respect her choices and putting her at a "feeding table" would NOT be something she would ever want to have happen.  I'm not saying that there are not times when it is not appropriate..... because I know it is (I worked for 5 yrs. at an assisted living facility - I "get" the reasoning).   

And so I watch her get smaller and smaller and question myself about any and all of the decisions I've made regarding her care.  She is now at a "place" where she can't verbalize to me what she wants anymore in terms of how she wants to spend the last of her days.  All questions geared to that are met with "I don't care, it doesn't matter."  Yet there are still things she enjoys like getting her hair done and drinking Coke while eating trail mix that I bring her.  

She was moved yesterday to a private room (usually it takes being on the list for 3-4 months for that to happen) and she didn't seem to care one way or the other.  Asking her what of her things she'd like me to bring in for her to make it homey has become pointless.  She still says it doesn't matter and that I should decide as things have worked out fine so far.  Groan ..... 

And so I cry.  I realized a couple of days ago that anything I do to make her space more homey is strictly for me.  She herself doesn't seem to notice although she was happy when I put up some of the family pictures.  OH .. she did say she'd like to have her TV now that's she's on her own.  That I can do for her.   

I've been slowly cleaning out her suite at the Lodge and that has been "painful" as well.  Because of the 70+ yrs. of heavy smoking there are very few thing that are not covered or stained with nicotine (I have to wash her clothes that I take into the center 3 times with Oxy added to get rid of most of the smell).  None of her clothes fit anyway but it's hard to just bag them up to go to the dump.  i'm hating every minute of it.  It's like cleaning out someone's place who has passed away only they are still alive.  

I don't know how to come to terms with this.  Has anyone else experienced the same kind of thing...... grieving for someone who is not dead yet but is no longer who they were either.  I don't know what to do that will help me "deal" with this and start functioning "normally" again.  (I can't concentrate on other things, I can't feel any motivation to do the things I enjoy and I feel like I'm walking in a fog .... not really here - if you know what I mean.  

Since there is no end point to any of this I think that's part of what is making this so hard.  True she's very "ill" but she is not any worse than she was a month ago and I know from my experiences at the ALC that this can go on for a very long time.  

I'm lost.   

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Reply by JennJilks
08 Aug 2015, 4:32 AM

My poor Jazz. You just have to do what you can as best you can.

What helped me was to write my dad's obituary. This is just a small part of your mom's death, not her life. Anticipatory grief, it's a tough one.
Take comfort from this community. We've all been through this is one way or another.
Crying is good for you. It cleanses your soul.

Take a deep breath. Give yourself permission to feel all of these emotions. Then try to let them go. Do something for yourself. if you can.
My husband has cancer, and I try to live each day as best I can.
I hope this helps. This is a wonderful community. I'm so glad you reached out!
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Reply by Carlyn
09 Aug 2015, 8:52 PM

Dear Razz,

First, a virtual (((Hug))).

Now. I have been where you are. I agree with JennJilks above.

Also, it's 8 years the other side of my time where you are now and for a few reasons, there is residual stuff working it's way out. I'm in tears nearly daily for a little while. Not long. I just let them flow. Some days, as someone wise here on the forum suggested, I write/journal privately in handwriting on paper. Writing by hand seems to take the extra time I need to get things out in a way that actually feels like release. As opposed to typing which just doesn't seem as effective for me re: personal journalling.

This is a very hard time. I agree with what you're doing and why and how and from where I sit, you've given everything a great deal of thought and consideration. Your mother's wishes being at top of your list is what impresses me most. I also think that's why it hurts us so much. We would like to keep them here but it's not up to us always.

I'm thinking of you with great compassion and hope you let yourself feel it all and cry when you need to and write it down. Anywhere. Here, privately, online, offline. And take walks. Even if you only have 5 minutes, take a walk in fresh air somewhere. Even if it's just the facility parking lot.
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Reply by Carlyn
09 Aug 2015, 9:08 PM

Razz, apologies for double post. I'm reading a link posted in a different thread by Katherine. I find this excellent helpful read with further link "Caring for yourself" for more reading at very bottom.

Here it is - 
Living with Limited Time: Exploring Feelings 

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Reply by Razz
10 Aug 2015, 2:26 AM

Thank you Carlyn for both your replies ..... I did read the article and then followed on to the next one about Caring for Yourself".   I think in general it's not something that caregivers tend to think about ... caring for themselves.  For me I'm just too busy trying to micro-manage everything and in my mind it ALL has to be done YESTERDAY when that's not the reality for most of it.  Having said that however I can't help but think that once I'm finished cleaning out my Mom's old place and "The End" is stamped on that part I'll feel better.  As long as there is still quite a few things to do it's hanging over my head like a dark cloud.  

I have every intention of calling in 310-DUMP or a company like that to come and take a great deal of it away.  They actually sort some of it and will redirect it to the Goodwill or proper recycling places.  We did that whne Mom moved out of her apartment and it was money well spent!!!  

I was there again today for a couple of hours and although I worked hard it feels like I barely made a dent.  No wait - I'm being too hard on myself .... it is getting done ...it's just taking longer than I hoped.  You wouldn't think that just under 400 sq.ft. would hold that much stuff!!!  
And I still came home and cried.  This is not living .... this is exsisting from day to day; putting one foot infront of the other.  I have to find a way to change that; to change my thinking or something.  I can't change the reality of the situation so I guess I need to change my view of it.  Something.  

As for self care.... well if you asked me right now what would be one thing I'd like to do for myself I couldn't tell you.  Honestly .... it's like my brain can't find that area to draw on at this time.  How sad it that?  

Thanks again - Razz
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Reply by Carlyn
10 Aug 2015, 2:32 AM

Ah Razz...this all sounds like my experience too. 

I did all the same things, hit the same walls, couldn't even think of what to do for me if I wanted to or had a minute to think. Looking back it's easy to say "I would have" but the truth is, same as you, all I cared about was keeping up with and ahead of my parents needs at end of life. And I was nowhere in that, even with illness. I took 4 x the daily med dosage I needed for me to keep going.

I'm with you in spirit. I just want you to know you're not alone in this I guess. It's not living but this is all still crisis mode a bit. If things level off a bit, it will free up some time I hope. That's what I kept thinking and hoping for anyhow.

Keeping you in my thoughts.  
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Reply by Razz
10 Aug 2015, 3:11 AM

Thanks Jennifer for your caring reply.  On top of everything else I did what I thought was a good thing .. and upgraded my computer from Windows 8 (which I hated) to the free Windows 10  Yell ...Cry .......Yell..........  you get the idea.  My response to you was done before my response to Carlyn but it went "poof" and is now in Cyber La La Land.    Right now I'm so frustrated with my computer I'm about ready to take the BIG HAMMER to it.... but I do use it a lot so I'm just going to have to either sort it all out myself or take it into the Geek Gugs, cry and beg them to make it all better.   

I smiled when you talked about writing your father's obituary.  I've done that in my head so many times in the past few years and to be honest I still haven't come up with the wording that I'm comfortable with.  So in other words it didn't really help me any.  Our relationship was very "complicated" (some would say she was very verbally abusive to me and my brother up until she had her first fall from one of her TIAs and her personality changed 180 degrees).  It was so totally and completely ODD to say the least.  I was 57 yrs.old before I heard my mother say "I love you" .... and then I just stood there with my mouth open.  It took a long time for me to wrap my head around that one.  But I digress.  I know that she'll want something that is short, simple and to the point but should contain a certain dignified level of "flowery" talk.  I can't do "flowery" for her.  At least not in my head yet.  

Then there's whe whole eulogy thing and it's going to fall to me as she has out lived everyone (including my brother) and she was not a "church" person so that will end up being my final "duty" for her.  In a way that will be much harder and since our family were terrible record keepers ..... I can't fall back on just giving a history of her life.  In fact there are large gaps in it and no one around to fill them in.   

I wonder if some of this "grief" I'm feeling is also linked to the understanding that I will NEVER have the mother that I so wanted to have.  That time has run out and we'll never ever be close. I have leaned on my Christian faith often over the past few years and I think that it has helped develop a lot of compassion for her as a human being who is not having a gentle journey at the end of her life.  I can't tell you how many times people have asked me why I've always been the "dutiful" daughter when it was obvious that it was not appreciated and even critized. The answer is a very simple and easy one for me ....... my father loved her dearly (he passe away 30 yrs. ago).  Since I loved my father so much I "take care" of her in honor of what he would have appreciated .... not becuase of any great bond I have with my mother.  

Funny when I think about it.  Our relationship never was remotely close and although it's much closer now it's still not very deep.  I am moved by compassion for an elderly woman who was and is a tough "Ol' bird".  There are things she did in her past that I can admire her for.  But she knows very little about me on a personal level .... in fact there are sides of my life she doesn't know about and will never know about.  

Actually that brings me to something else which she is not aware of but it was a similar experience as yours Jennifer in terms of writing the obituary.  I've been taking guitar lessons for 5 yrs now and although she knew I was good singer she didn't know about my playing the guitar..... she wouldn't have approved at the time I started ... "ladies do not play the guitar, piano yes, but not the guitar"  Laughing .  I so discovered a genre of musice that suits my playing style, fits well with my vocal abilities and taps into my flare for entertaining (she doesn't know about that either).  I now have an hour+ long program that I perform at seniors homes and similar venues.  I perform in costume and base the songs I choose to help tell the story of my mother's mother  - a hillbilly from Arkansas who tried to find fame and fortune.  So my play list is full of Bluegrass, Spituals and old tyme gospels.    While Mom was still in the hospital I had this very strong feeling that she didn't have many days left.  She looked grey and was very dioreintated. (I told you she was one tough ol' bird).  I came home and looked up the chords for a hymn she said she has always wanted at her funeral and started practicing it.  I stopped practicing it when she moved to long term care but I'm thinking that maybe I should sit down and work on it some more.   Maybe it will motivate me to play my guitar again and find the joy I once felt when I played and performed.  

Thank you again - Razz  
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Reply by Razz
10 Aug 2015, 3:29 AM

Oh.... PS - the song is "In the Garden" ...... I come to the garden alone, while the dew is still on the roses ..... etc.    
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Reply by Razz
10 Aug 2015, 3:38 AM

Talk about not paying attention to my surroundings ........ I just realized that my "avitar" is in fact a picture of me in one of my performance "get ups".    Too funny!    I wish I knew how to go back and edit my post and thuse avoid multiple posts.  Minor stuff however.   
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Reply by Carlyn
10 Aug 2015, 3:51 AM

Razz, I love your photo. It must've been meant to be there still.

I'm sorry I misread some of what you're going through. Having the same attention issues here apparently. I don't know.

I can commisserate on the computer issues. I hope that resolves itself soon.  You don't need that on top of everything else.
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