Watching a person you love die a little at a time........ (friend)

[Travelassie]

Originally Posted by cynwldkat

Good morning dear friends. Today looks like it is going to be very busy, listing to do, carpets to vacuum, cats water fountain to be taken apart and cleaned and then of course my normal things........I'm getting better at cleaning DH's medical equipment so that helps! It just took a bit of learning! Like elston said--it's like the first time you have to sterilize baby bottles---you just learn!
Have a good day everyone!

Hoping it's a good day for you today- I hope you have time out of that busy schedule to take a little time out for you today- guess that's a tall order, though.

It's true, the more you do things, the more efficient you become at doing them.

They tell us it's supposed to go to 85 or so here in sunny Florida today- wish I could bottle some of that and send it up your way...

[riaelise]

My beloved grandmother died three years ago of dementia and related issues. Broke my heart. What was once a vibrant, loving woman declined slowly but surely every year. Each time I visited her, more and more of her slipped away until the last time I saw her she had slept the whole time and was completely unresponsive. She had stopped talking two years prior to death. The last time words came out of her mouth was when I brought her great grandchild to see her from Texas. She held so dearly onto my daughter and would let her go...kept saying "sweet baby". She never said anything else again. I clearly remember the last time I got any response from her -- I was crying because when I stared into her eyes there was nothing -- we had long gotten used to no talking, but over time there was nothing at all. Not even a clasp of the hand. I had put my head in her lap and told her how much I missed her touch, her words. Then I saw her eyes start to tear up. She strained to talk, but couldn't. With a bit of a struggle, she put her hand on my head. my words had somehow broken through and it saddened her that she couldn't respond to me any longer. I think it pained her very much. She had helped raise me and I knew how much pain she felt being rendered to the condition she was presently in.

That was the last time I got any response at all from her. I lived out of state, so her caregiving was shared by three of her four daughters that lived locally. They had to watch their mother daily slip from them. Towards the last two years, when they visited, they never got acknowledgment, response, or anything. That pained them very much. On the year of her death, she was sleeping almost all of the time or staring into space.

One day the nurse came in to her room on the one "off day" when my mother and her sisters weren't there (my mom worked full time, one was disabled) and discovered that she had died in her sleep. I suppose that was a peaceful, good way to go, from a physical standpoint. However, the events leading up to her death were very traumatic and basically we had grieved for many years over my grandmother's loss before she physically died. Death was more of a finality than anything, because the person we knew had passed away years ago. She was physically alive but yet, she wasn't. She was simply laying there but everything else was gone and at the end, the people she loved so much were taken from her as well.

I really hope and pray that doesn't happen to me. I don't want to be robbed of my memories and not respond to the people I love. To be trapped and powerless over how you feel. I don't want to put my daughters through such an experience.

Just posting this makes me very sad.

ALS is a horrible disease..I wish the OP well and send love. I have neuro problems myself that are unknown, but I did give a sigh of relief when ALS was ruled out.

[cynwldkat]

riaelise..a lovey heartfelt post! It brought tears to my eyes. Your grandmother was so blessed to have you and she knows that and is watching over you now! I am very happy you posted your story--there are so many like that and people keep it locked inside and it is heartbreaking. I hope your neuro problems get solved and you feel better very soon. Life sure isn't very easy.....
Thank you TL...yeah time for me is hard to come by lately but I do try. Just coming here is my time!

[riaelise]

Originally Posted by cynwldkat

riaelise..a lovey heartfelt post! It brought tears to my eyes. Your grandmother was so blessed to have you and she knows that and is watching over you now! I am very happy you posted your story--there are so many like that and people keep it locked inside and it is heartbreaking. I hope your neuro problems get solved and you feel better very soon. Life sure isn't very easy.....
Thank you TL...yeah time for me is hard to come by lately but I do try. Just coming here is my time!

Thank you. She meant so much to me...to this day I have these random moments when I break down into tears over what happened. My mother has a lot of sadness bottled up, like you said, and she is scared that she may not be able to handle the day when it "all comes out". It's like she was on "autopilot" when she was a caregiver. To keep her mind from really going into a dark place, she tries to keep busy. However, she will retire soon and that is when she fears her sadness will overwhelm her. What really made her the most sad was, like you described, watching her dear mother slip away (in a way, die) at a time. It was hard going to the hospital and sitting next to your mother, holding her hand, talking to her and receiving no response at all. After awhile my mother just stopped conversing with her and she simply spent time with her and made sure that her needs were taken care of by the nursing staff. I think my mother's pain is far more than my own and I just hope that cessation of working doesn't cause a torrent of grief for her. My grandmother lived a rough life (a divorce and a philandering second husband), but the two things she cherished most was her faith and her family. Sadly, at the end, she recognized or acknowledged neither. I held a very special place in her heart. At the end, I too was no longer recognized. Imagine that.

So, OP, I can understand what you are going through and that is why I send you love and prayers from Texas. I love my husband very much as well. Very much. It's like each year I'm with him, the more I can't ever fathom being without him one day. It's such a difficult period right now in your life, I am glad that you have channels to express yourself because it's like you have to be Hercules and it's hard.

And thank you for the good wishes about my neuro problems. It might be MS, but I haven't been diagnosed yet. It's one of those long "wait and see" type things..but I guess I rather that then definitely being diagnosed with something. But ALS...I remember losing sleep over that. My husband can attest to that. I was so scared and I remember the elation I felt when the neurologist ruled it out. The ALSForums were very helpful, I don't know if you've visited there. It can be sad but very good at the same time. check it out.

[cynwldkat]

I do visit the ALS forums and even have a few I belong to on FB but honestly I fall into a deep depression when I spend to much time on there. Depression is sitting on my shoulder all the time and if for no other reason then to keep my DH positive I cannot allow myself to go there. Still it happens..after all I am human.

[Travelassie]

Originally Posted by cynwldkat

I do visit the ALS forums and even have a few I belong to on FB but honestly I fall into a deep depression when I spend to much time on there. Depression is sitting on my shoulder all the time and if for no other reason then to keep my DH positive I cannot allow myself to go there. Still it happens..after all I am human.

I don/t believe I'd go there either in your shoes- from what you say you get a lot of help, support and information from your ALS Clinic. IMO (and that's all it is), forums can be helpful but very often they're places for people to go to vent, very often negatively. You don't need that.

Your valiant efforts at keeping that depression at bay is evident to anyone who visits this forum, Cyn.... I know it doesn't seem that way to you, being in the middle of it as you are, but you're a brave, brave soul, think about that when you're able to, because it's true......

Still praying and sending positive thoughts and energy your way, every day, my friend....

[cynwldkat]

You and others like you Tl is what helps me get through this--keeping my depression away as much as I possibly can. I know it sits there just waiting for a small chance to jump into my life but I work so very very hard to keep it away and I know I could not do that without my friends here! .
Just finished dinner--going to clean that up and relax a bit. Long day but did finish most of what I set out to do. Good night my bestest of friends!

[Travelassie]

Originally Posted by cynwldkat

You and others like you Tl is what helps me get through this--keeping my depression away as much as I possibly can. I know it sits there just waiting for a small chance to jump into my life but I work so very very hard to keep it away and I know I could not do that without my friends here! .
Just finished dinner--going to clean that up and relax a bit. Long day but did finish most of what I set out to do. Good night my bestest of friends!

Accomplishing most of what you set out to do is a big accomplishment, give yourself a big pat on the back for me! (or on your forearm if it hurts your shoulder to reach your back).

Sounds like it's time for a well earned rest for you. Sleep well, and may angels watch over you and DH as you rest.......

[Dude111]

Originally Posted by cynwldkat

You and others like you Tl is what helps me get through this

Ahh sweetie we all care about you!!

I know its hard to know this because you CANNOT HEAR OUR VOICES but trust us,we care very much!!

[cynwldkat]

Many thanks Dude & TL....it means so much to me.
DH dropped his medication bottles 2 times last night--his hands are really starting to go now...he cried--I cried with him.