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Not a good momweek
Posted: Monday, February 11, 2019 11:18 AM
Joined: 3/8/2018
Posts: 769

I saw her on Thursday and yesterday, both times she was agitated, stuck in her internal conversations and not present. (She knew me yesterday). I sat with her, put lotiin in her hands, held her hands, hugged her, told her I love her. Don’t know how much got through. Spoke with the head nurse, she’s going to talk to the floor doc and get the geripsych to see her again.
(I’ve been away from the board for a while, been dealing with lawyers and banks, and banks and lawyers getting mom’s financial plan in place. Its been waaaaay more work than I anticipated)
I’ve been sad since yesterday afternoon, cried last night and was pissed off at God for taking away so much of her. What, losing most of her vision by 60 and losing my dad at 66 wasn’t “enough”? Yeah, let’s drain away her sense of self and leave a shell. Her 89th birthday is in two weeks and I’m thinking there’s not much to “celebrate”. It’s awful, and cruel to both of us. I don’t like going, its hard on me, but I want to think she perceives my presence on some level

I usually feel empty after I leave MC, it goes away after a shirt while, but I still feel empty and adrift today


If this is the “newest normal”, I hope she doesn’t last to her next birthday. I don’t want her “existing” to 90


Posted: Monday, February 11, 2019 11:22 AM
Joined: 11/3/2018
Posts: 123

Yes, hoping she isn't here for her 90th is a bad thought, but remember: it's a common thought for those of us dealing with LO's with dementia or Alzheimer's. Please do not beat yourself to a pulp for having these thoughts. We all have them because to us, our LO's are suffering and we want them to not suffer any longer.     

Posted: Monday, February 11, 2019 1:07 PM
Joined: 11/13/2014
Posts: 2117

I'm so sorry Sel.  Heartbreaking.
Posted: Monday, February 11, 2019 1:26 PM
Joined: 4/10/2017
Posts: 266

I totally disagree with the clown man.  My mom doesn't want to exist like this.  Like you,  I see this disease take away dignity (losing bladder/poop control).  To leave a shell of someone who once thought she had a purpose in life.  Like many of you, I see the no show son of hers hurt her after taking money from her...not calling.  No wonder she's depressed and confused.  It is cruel of God...I have wished for another stroke to end this for her.  I don't want to live in her shell.  Do any of you?
Posted: Monday, February 11, 2019 1:28 PM
Joined: 4/10/2017
Posts: 266

It's reality NOT a bad thought.  That's my thought.
Posted: Monday, February 11, 2019 1:39 PM
Joined: 1/28/2019
Posts: 23

Having those thoughts is nothing to be ashamed of. The analogy I use is a little extreme, but it makes sense. It's like having a pet at the end of their life. You try to make them more comfortable (bed steps, extra treats and attention, and shorter walks etc.) and it works for a while until it is time to end the suffering. Visiting your LO most definitely is a positive influence in their life, especially when they start losing their daily functions. Sometimes, it's the only thing they look forward to. Making them more comfortable where they are is so important, even if they do not always comprehend what's going on. It is stressful, and weighs a lot on your shoulders when you visit, especially if they're having a bad day. In these times, it's best to remember all the good memories you have with you LO and assure yourself that you know their true personality. It's just the disease taking over. We're all helpless against memory issues, so the only defense is to comfort them to live the rest of their life peacefully.

Try your best to enjoy your time you have left with her. Maybe you could try to channel her internal conversations to something you can both talk about. Many alzheimers and dementia patients have great memory of their earlier life, so maybe bonding over a mutually positive subject is the way to go.

I wish you the best of luck, and take care.

Posted: Monday, February 11, 2019 4:23 PM
Joined: 2/29/2016
Posts: 1268

Hi Sel. So sorry. Rough week here as well...the kind where it is all I can do not to sit on the floor in the aisle at CVS and cry. My mom will turn 90 next month; this is no way to live and she would be horrified if she had any awareness. Wishing you peace.
Posted: Monday, February 11, 2019 10:44 PM
Joined: 9/8/2017
Posts: 2034

Oh, I totally get you.  Yeah that sucks.  I didn't know she lost her vision so young.  My mom was pretty much wanting to quit when she lost most of her vision to macular degeneration.  

Don't give way too much of yourself away.  Sounds like you got too much going on.  Take breaks here and there. It's a tough road, especially on your own.

Posted: Tuesday, February 12, 2019 6:10 PM
Joined: 2/3/2018
Posts: 402

Hey SelEt - just sending you some peace and harmony thoughts. Our weeks have been improving this month, January was all crash-and-burn. I hope you and your Mom's week finishes better than it started.


Posted: Wednesday, February 13, 2019 9:48 AM
Joined: 3/8/2018
Posts: 769

It’s been tough trying to shake this off and move forward, been weepy since Sunday..I suspect it’s because I’m thinking since this was her status twice in one week, its going to be the new-new-normal, and its another decline

Plus, her birthday is in two weeks, they do cake at MC, but honestly, there’s nothing to celebrate any more. I keep thinking back to her bday last year, and how different things are now. It’s awful and sad

I have acupuncture today and my support group tonight, maybe those will help

Posted: Friday, February 15, 2019 12:25 PM
Joined: 6/24/2012
Posts: 346

Please don't beat yourself up for your thoughts about mom not existing to the next birthday.  We all think that way.  I tried to explain to my brother and his wife that if mom's mental anguish was displayed on her physical body instead... she would have open gaping wounds and tubes in all of her openings and would not be able to do anything on her own.  That sight would make us realize how much she is suffering.  But because she is suffering inside of her mind, it is not 'visible'.   It's a long slow form of torture to its victims and that includes us.  And yes, we have to find the reason to believe each day that there is a reason for it all and that there is meaning in it all.  And we do that.  But then there are these times when we just can't bear to see this person that we love suffering so much and in such a debilitating way.   Hope you turn the corner soon and find a better week ahead.   


Posted: Friday, February 15, 2019 7:18 PM
Joined: 1/10/2019
Posts: 70

This disease sucks balls!!!! I hope that acupuncture and support group helped even if just for a short period of time. I've been trying to just enjoy the moments that I'm not crying as much as I can. I think in doing that, it sorta feels like a recharge or a release of dopamine or something. For example, I was cooking my mom some oatmeal and I wasn't crying (which I normally am,cause the A.M. is the hardest time) so when I noticed that I wasn't, I just started singing (I'm not crying today, im not cryyyyying to day hay hay) lol you get my point. But just enjoying that 1 little thing that didn't suck like it normally does helped me make it through a per usual emotionally rough day. Now granted I still ended up crying, but boy that small moment of personal joy was everything.
NC caregiver
Posted: Saturday, February 16, 2019 5:43 AM
Joined: 2/7/2018
Posts: 858

I am sorry about your Mom's decline SEL .  You are doing everything you can for her. But this disease is so relentless & progresses no matter how hard we try.   Try to do something to get away & relax to offset this stress .  I agree it is so unfair that your Mom (and you) have to go through this .  Please don't beat yourself!lf up for wishing your Mom to be at peace & not suffering .  I pray frequently for Mom to peacefully pass in her sleep so she doesn't have to progress any further .   It's what we would wish for ourselves if it was us.
Posted: Saturday, February 16, 2019 2:35 PM
Joined: 9/16/2018
Posts: 4

oh god, I so know how you feel and my mom is still about stage 4-early 5 so she still has good days but I've become the enemy because I don't say yes to everything the way her husband does (and his memory is going too). I sit here and feel shitty because I consider this one more rotten temp job in the long line of temp jobs I've had in my life and I hate myself for it. She wants to go to the ER for a tummy ache and then out to eat after. And there is no way to reach them. I wish I had wise words for you but my wisdom is elusive at best. I've been doing this since September and altho I'm pretty smart and know a lot about psychology, when they view what you're doing as being mean to them, it's difficult to absorb.I'll walk off the end of a pier before I put my children thru this pain.
Posted: Saturday, February 16, 2019 2:43 PM
Joined: 9/16/2018
Posts: 4

sunnymansfield,  my mother in law recently passed. She did not have dementia but was 96 and in poor physical health, she was in heart failure the last year of her life and the daughter caring for her just left her in a care facility that didn't care for her when she could have gone home to die. it was all the woman wanted. my hands were tied and it broke my heart when she died all alone in that wretched place but my first thoughts were that she was finally free of that pain-ridden shell she had been stuck in.
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