I find the waves of sadness so hard.
Most of us go through it.
And the guilt with grief is toxic... although I am a little better with the guilt.
I will always regret I didn't go in those last two days and some other things I didn't do I planned to do. I had the time... but delayed. How is it that your mind and eyes can tell you what is really going on and thus your common sense tells you..you don't have a lot of time...and yet... there is this other place in the brain that you..or I should say I go to...that causes me to act like I have forever? I think that is the denial center of the brain. I even had some feelings that week and attributed it to guilt for not being there. I knew and told her I wouldn't be until after Wednesday. We saw her on Easter. But DAMN! Thursday? Friday? In 6 months... I only had 3 -5 day absences.. well a week on one because i was sick. BUT... I ALWAYS called her.
She lost her ability to pick up the phone to call me or answer it or we would've talked much more. And she apparently didn't think to ask them to call me. I had posted a hot pink 8x11 paper over her night stand where the phone was. In black magic marker I posted my name, relationship and phone number, requesting that ANYONE, please call me at ANY time and give the phone to my mother because she was unable to do that without assistance.
I didn't care who called for her, nurses, aids, dietary, housekeeping, etc... but only ONE aide did.
God bless her. I thanked her often and we bonded somewhat. I will talk more about her another time.
But she was the ONLY one. I know..I could've made a fuss... but I am not usually that way and I know they are short staffed and busy. But ...now..I think I should have.
DAMN 20-20 hindsight!
If the aide didn't call..I would call the nurse's station, asking them to please go to my mother's room and answer the phone... but it was a hassle because you have to go through the main switchboard to be connected to the station in another building and they hardly picked up the phone and it would ring and ring and then revert back to the switchboard. I also felt like I was bothering them. I did do it though... on days I couldn't be there. Not every one..but I made sure I called so she wouldn't think I forgot her.
But this last week was the 1st time...in 6 months since she'd been there that I did not call at all.
I just can-NOT-b-e-l-i-e-v-e I did not visit or call her last 5 days on earth!
If I hadn't been working on taxes..I would've been there in beginning of week!
If my stomach hadn't been bothering me... I would've gone Thursday!
And if the nurse after calling me to inform me of her acute urinary retention w/distended abdomen that was relieved with a foley catheter... hadn't said, "She's fine and talking."...I would've gone in that day. My stomach still bothering me...I asked because I was thinking of not going if they were all interacting with her and she was alright. So..when she said that...i said..I will be in tomorrow.
But she wasn't "FINE". They never told me about some other things... that had I known... I would've been concerned and been right there.
And then about 5 hours later I got the frantic call from a supervisor stating she was bleeding heavily from her intestines.
I don't blame them for my not going in because I am the one who still made the choice..thinking she was alright and one more day wouldn't matter.
Or maybe I do... because they call me to inform me for a stupid med change... but didn't call to tell me they were wondering why she was so lethargic and wanted to sleep, or that her coumadin was very high, or that she began refusing food on Thursday evening (dinner).
They called in beginning of week to tell me she has a small open sore that they are treating..had good borders and would heal nicely.
I asked about the sore Friday after noon and she said it was healing nicely.
I blame us all. Them for not communicating better with themselves and me and me..for not being there or calling.
I have been wondering if with the dementia she forgot I was doing the taxes and said I'd be in after Wednesday? And I wonder if not at least hearing my voice caused her to feel forgotten?
And I wonder if those things caused her to feel sad and to give up?
And I wonder if she suffered?
And I wonder if she was scared?
Did she know something was wrong and couldn't articulate it?
Would my being there have made a difference because I may have seen that something was wrong? Many times I had been her advocate..getting help for her or insisting (politely) that something was done.
But..I wonder if I dropped the ball?
Over last few months she winced and complained of pain.."Stating it hurts. Help me. help me."
I did inform staff.
I even questioned the neurologist last month.
I told her I felt my mom may be having intestinal problems because even though she complains about pain elsewhere... she was ... in my opinion consistent about that area.
Part of the problem was that I'd get someone... and when they came back in..she'd say it was her head or seem content. It was intermittent too.
One day while on phone with her she started out of the blue stating it hurt, it hurt. She got mad at me as I tried to find out specifically where. Then I heard D, her aide ask her where it hurt and she said "The bleeding!" (How ironic) then "My Foot!" *sigh*
So I asked the neurologist how we can tell( I may have already written this here..don't recall.) if the pain is real and if so where? She said" You can't" Then I said, "So...I guess each person should be treated with dignity and respect..believing it is real and find out why.?" She agreed.
She did order a C-spine x-ray and head CT that day. Both came back with results consistent with what was going on with her. She had severe osteoporosis, but nothing especially indicative of neck pain. her head CT came back with normal arterial aging..or something like that.
One thing I do wonder... is that they said she had Alzheimers (she was nothing like the residents I saw in the hallways -totally out of it and extreme in behaviors. She couldn't find the words to articulate some thoughts. Like one night she said..I don't know why I can't tell you what I had for dinner. She mixed up my son for my husband when making an introduction..and other times she knew. And she could respond appropriately in conversation..most of the time. Her familial facts were mixed up. The aides told me she spoke about her mother a lot and she called the day aide Patty. (I am gong to miss hearing that.. Patty..ha! or Patreesha! when she was mad at me.)
And I get a kick out of how her doctor's office staff, the ladies in her building..they all called me Patty.. because she did. Only my close childhood friend and family call me Patty and the occasional stranger. I do like it... and of course Patricia. (Still refer to myself as Pat though.)
I regret missed opportunities...so many missed opportunities.
It's not the things I did wrong as much as the missed opportunities that bother me.
I don't even know what to write in this blog right now.
Maybe I shouldn't have announced the GI bleed in this blog, but I was hoping for collective prayer. I very much believe in the power of prayer... but healing wasn't meant to be this time. I know she has now experienced total healing in heaven.
There are so many things I wonder about her last days as I get bits and pieces. ???
Take it from me...if there is ANYTHING you can think of you want to tell someone you love, do it for them ..do it NOW. I think we all tend to put off what we can do today..for another time... but then it never seems to come... because we get busy...or whatever. Good intentions...
Gone forever is a long time... on this side of life.
I can't believe I will never do anything with her again. I feel such a void. No more visits to the nursing home to see Mom.
I will miss seeing some of the residents I used to visit briefly with en route to Mom's room and back out again. I would like to go back to see them again... but I don't know if I can. Most of them are forgotten people. When I go there to see them...I will remember that I didn't go see mom those last 2 days... and if I didn't go see my own mother on her last 2 days here... how can I go see strangers? Someone told me that doing that would honor her. I do need to go tell her one friend there. they used to shop together and I'd wheel mom down to see her..even though Mom didn't interact much.
The irony to this all too is that on the 25th... this friend, the evening aide and I thought Mom looked better and was alert and I was hopeful this new med was helping her. And then
But I am also very much beating myself up for not being in to see her those last 2 days...when I think something was going wrong and staff missed it. (I have a lot to say about this in due time) The truth is I wasn't feeling well with my stomach..but I certainly could've over ridden it and if only I had gone in.
I used to visit her 2-3 times a week. Staff tells me I was in the top 3 families that visit their family member. Some get none and they..the staff are their only family. It is a sad/difficult environment and I am so glad I brought my granddaughter so she could see her great grandmother and also see other people in need of love ...but more on that a different time too. My mother and the other residents LOVED seeing her. She's 7 and little children... I think breathe life into a place like that.
I will miss the staff.. There were good things too. I actually liked where she was... but they were short staffed. They have been supportive to me. I had befriended a lot of them and had my routines in the place. They let me use their break room to get mom fresh coffee.
I always LOVED how she loved a good cup of coffee and it always felt so good to give it to her there. Other wise..she only had whatever they give you in those little plastic mugs on your dinner tray and we all know that is never very good.
I have so many things to say about all of this.
I really don't know what to write in this blog.
I don't want to lose the few consistent readers I have because I am writing about a depressing topic. I think first and foremost..our blogs are for us..the authors... but as I have come to know some of you and hopefully will get to know others... I have tried to be interesting here... every now and then anyway.
I don't know how all of this is going to evolve..in terms of writing about my mother and these experiences..things I've learned, insights gained and yes regrets too.
I hope that I will experience inner healing as I work through these things via my writing. I also hope that Some of you will share your thoughts and insights as you feel led to do so if you read anything... and I hope that maybe I will be of some help to someone who may happen to read my words..perhaps giving them some insights.
Or..maybe I won't write about it here at all. I don't know.
For me... my favorite things I've written are the humorous posts..the inane, zany posts... because I like to laugh. Or writing about the ridiculously funny things that happen to or because of me. Lucy and I could be kindred spirits.
Laughter is healing.
And it's fun.
Hopefully that SeaSpray will be back soon. :)
Friday night was so hard, but I am glad we were all there.
I am also very glad that I have been writing about Mom and my experiences/feelings and the tender moments between us since July. And even the negative things that annoyed me. Perhaps the positives will reaffirm that I did love her and do things more than I realize now and the negatives will bring a clearer perspective thus enabling me to realize that all my perceived failures weren't entirely my fault because it takes 2 and also..life circumstances. But I did make mistakes.
You should see all the things I wrote that never got posted!
At least now..when ready..I can go back and reprint all of these things and perhaps make a nice journal to be picked up and read any time.
I wish I took pics of her in the nursing home but she always got mad at me when I took pictures of her and I have many pictures with something in front of her face. I do have pictures though. Son videotaped her on Easter and she didn't care. Had I realized that..I would've had some pictures taken with her.
I started to appreciate little things on Thursday. Before that...it was like I was in a timeless tunnel. So weird. Waves of realization still hit... but they aren't as wipe out crushing as they had been. Now aside from a bacterial infection I was being treated for...I also have the mother of all colds I caught from younger son... on top of that and so have been down for the count physically.
I know it will be a process.