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Old 07-27-2011, 05:33 PM   #16
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Re: What is still always the same.

Hi ...

Chris ..mom is 87..she sure doesn't look it. I look at her skin and it still so smooth. She still really is very pretty. I would like the genes that go with the skin but not the alz. gene, if there is one!!

I will try to remind myself after she is gone that she is in a better place...any place is better than the land of Alz. Though I understand it will be hard...and like you said...it will be hard to believe she is actually gone! That's the one I am having trouble getting my head around....that she will actually be gone.

And if we haven't said it enough..thanks for sticking with us after your mom passed so we can see how it is on the other side. We are learning from you.
I am close behind you and I suppose, Deb, you will not be far behind me.

Deb...when they are given morphine, are they asleep from that point on or do they occasionally wake up.
And I don't know if I knew your dad also had the pressure sore on his tailbone...you probably mentioned it...I just don't remember. (Can we use that word here? "Remember" )

I took the day off today to take my grandkids on an adventure. We had originally planned on going to Key Largo for the day...about two hours away...
but I thought we had better stay closer to home...so we did but found fun things to do anyway.

I got one call from mom's residence and two from Hospice. I didn't need to go up there but they wanted to keep me updated on new developements. She took in no liquids or food at breakfast or lunch. She choked when they tried to give her some liquids so they have now ordered the thickener in foods and liquids. She did eat for her private aid tonight..about 75 percent. The worse thing to happen today is that her lymph node on the right side of her throat is swollen to the size a very large egg. That is the reason she is having more difficulties swallowing. I did go up thre tonight at supper to check on her .. I saw what she had eaten and felt her neck. It is big! I would imagine any more swelling and it would choke off any and all air ..

I spent a little time with her... cleaned her up and put on some lipstick. (just to keep her lips moist) .. and even though she was sleeping, I talked to her for awhile and at one point, bless her heart...even while sleeping she smiled that smile.

Love, Meg

 
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Old 07-27-2011, 06:09 PM   #17
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Re: What is still always the same.

Ohhhhhhh Meg...........I'm just catching up on your thread........oh......my.......please know you are in my thoughts and prayers. This disease SUCKS

I'm having a pathetically sad day and am not to the stage that your mom is. Glad that she still has some smiles for you.......ah honey......my heart aches for you......I will be better about checking the boards. Goodness knows you've followed me on my journey............

Big {{{hugs}}}

 
Old 07-27-2011, 06:28 PM   #18
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Re: What is still always the same.

You got that right TC...it sucks!

...and thanks for the hugs.. I will take any and all that are offered.

This has been such a long long road.. years!...so it is a difficult concept to grasp that there actually could be an end.

And what of your pathetically sad day? This is the place to tell it... no matter whether it is better or worse than my situation. We are all certainly in this together.

Love, Meg

 
Old 07-27-2011, 09:06 PM   #19
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Re: What is still always the same.

We all go through rough patches at every stage!! There is no easy stage just better days that we have to grab hold of.

I am glad your Mom decided to eat tonight Meg. It's a long exhausting progress for all involved. I did notice the same lymph swelling with my friend's Mom this weekend. That type of lymph swelling is usually a sign of infection. Yep, Dad had a pressure sure on his tail bone the last couple of weeks and his heals were blackened but the skin never broke down. He was repositioned every two hours to prevent them from getting worse, propped with pillows, and placed on an air mattress with an egg crate on top of it. It did help.

It will depend on your Mom whether she is awake or not. Dad had periods of lucidity. Morphine was only used when he was being changed or moved and that was because of the pressure sores. A simple repositioning usually didn't get a morphine dosage. He truly didn't use much. My friend's mom did not seem to wake up but we think she had a stroke which lead to her death. After her "episode" she was unaware and getting morphine on a regular basis because of non-verbal pain indication.

Meg... Vaseline! I used lots of Vaseline on Dad's lips. I also used it on his hands and feet. It was what was recommended and it seemed to last longer than anything else.

Mom has had a good week. She was at her best for my aunt, 2 cousins, my daughter and then Sister three and four to visit. Today she was a little more confused and out of it. I gess she had been as good as she could be for as long as she could be. Tomorrow is my day off... sister 2 is going in the morning I will be back on Friday.

Chris, I am with Meg in thanking you for hanging around and letting us know not only what to expect but also that there is life after dementia care giving Meg, I keep you and your Mom in my thoughts and prayers daily!!

TC, hang in there and know we are all there with you......

Big hugs to you all!!

Love, deb

 
Old 07-28-2011, 10:08 AM   #20
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Re: What is still always the same.

So my mom told me yesterday that they've added a larger "pad" of some sort for my DSD in his recliner. My mom asked why and they told her it is to avoid bed sores!?!

I know I'm in on overly fragile state for lots of reasons right now, but hearing that just made me feel sick to my stomach...........I went over to help my mom pay bills yesterday. Usually I get in my "business mode" and can stay there - especially when we're dealing with her finances - and falling apart around her is ***not*** a good idea. I have a complicated history with my mom (as I'm sure lots of us do) and I've been more the "comforter" in the relationship than the "comfortee" (is that a word?? I don't CARE right now - "comfortee" it is!), but I just......lost it.

Sitting in the house I basically grew up in - seeing my DSD's hat hanging on the hall tree over my mom's shoulder........missing him.......knowing that the final loss is around......some bend in the road......I don't know which one exactly........it's just all......too much right now.

So - it's difficult to read about endings - yet I appreciate the sharing of your stories, as this board has helped me in numerous ways to prepare me for things that pop up on this "dementia road."

So - Meg - more {{{hugs}}} for you! Deb - thanks for your strength and continual presence - and everyone else here too - I thank you - very much

 
Old 07-28-2011, 11:00 AM   #21
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Re: What is still always the same.

TC... you earned that moment! I do understand. There are times when you just want to explode and times that you actually do. Be kind to yourself and allow yourself those moments for they are what gets you through the rough patches. I have had my moments as well.

Yesterday must have been the day. I have been with Mom more lately then usual. Partly because of her recent decline, partly because of visitors who want me to accompany them, and partly because she had a good week cognitively when frequently leads to a completely different set of problems. I am resigned to staying the course with Mom until the end... but occasionally something pops up that I would really like to do. My high school reunion is August 6. I would truly love to be there. So I ask my sister (she knows when that date is) if she would be home that weekend. Nope.. she's going for yet another weekend away but told me maybe one of my nieces might be around. I threw myself a smashing pity party and my poor daughter was invited! Then I went to bed and slept for hours, woke up, went back to sleep and slept some more. Today it is better.

So my best advice to you is to get yourself some rest. You deal so much better with life when you are rested. Sleep deprivation makes everything worse. That is what I did for myself and I can tell you that it helped.

Love, deb

 
Old 07-28-2011, 12:45 PM   #22
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Re: What is still always the same.

Oh Deb.....glad to know that you are human too! You write with such strength and wisdom I often think you never ***lose it***. Yes - rest definitely helps. I am soooo much worse when I'm overtired, and with living in a metabolic "wonderland" post thyroid cancer, I can get overtired easier than I often realize.

This is such a surreal road to be on. I was handling things really well for several months, so now it has thrown me for a loop that I'm so down.....again.......fearing the final end......so sorrowful........so grateful for my DSD and the incredible dad that he's been to me......but feeling the loss and the hole that no one else will ever be able to fill......WAAAAAAA!!!

 
Old 07-28-2011, 01:14 PM   #23
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Re: What is still always the same.

Oh my TC... don't even think that I don't have my moments when the world better look out!! Losing it is just part of the journey. You accept it and gather it all back up and keep going. Most of all you forgive yourself for those moments when you are human! I love my daughter.... I blow and she goes... "Yes Mom, I know Mom, What did you expect Mom, I know Mom, All better now Mom!" Then I have to laugh!

To make you feel better. I flipped my lid after Mom fell a few weeks back and threatened to make a neglect report to the state!" After my friend's Mom passed last weekend and I had done all I could for her, I went out back, overlooking the lake, and promptly fell apart. I can go on and on... I am human But I have been on this journey most of my life. It started with my grandmother in the early 70's, through working in a care facility, right through my Dad and now Mom since 1998. Sandwiched in those good years of the early 90's I have some other major problem to deal with. I have just figured out that I am human and how to get myself back on track. It's not the falling off that matters but getting back on track!!

I thought losing my Dad was going to be the lowest point. He was my rock, my foundation, and my hero. I do miss him every day but as I have said before I loved him enough to let him go. He was ready and therefore I had to be ready. I haven't lost him. I see him every time I look in the mirror because he is so much a part of me. He is now my angel.... and I still talk to him I may not hear his words with my ears any more but my mind knows exactly what he is saying back to me. I feel so very blessed to have had him in my life for so long. It is how it should have been, a great father daughter connection, and for that I am grateful. So I am grateful for what I have had and let that over shadow what part is missing today

Love, deb

Love, deb

 
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