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To the Moon and Back
Posted: Saturday, January 4, 2020 2:54 PM
Joined: 4/6/2019
Posts: 2

Musings is a good name for this discussion board and after spending the last couple of hours updating my profile and scanning the site and other message boards, I find myself back here. 
I am going to go on a long musing indeed but please, dear observers, do not feel obliged to read all this or respond. Honestly I just need a place to 'put' this. 
Oh what I have learned in the last 2.5 years.  I feel for everyone who is in the early phases of learning about and grappling with this disease, whether for themselves or a loved one.  And to think that I say that only after 2.5 years which in many ways is a mere snap of the fingers...and yet sometimes feels like an eternity. 

I am one of three siblings whose mom has Alzheimer's (or basically some kind of dementia for which the cause is unclear.)  And I am sad beyond belief.  As is often the case, as the 'daughter' I am the primary keeper of my mom's care.  I have always been very close to my mom, but for a few years, after I got married and was traveling the world and my mom - who had remarried when I was very young - was busy raising my younger half brother and while we still were close, life was busy for both of us. 

But luckily for me, I was able to share some of my travels with my mom, having her come visit me in Australia and then taking her to Cornwall, England to the town where the BBC Doc Martin series was filmed.  She was always adventurous and I credit my own curiosity and love of exploration to her influence...even though her life decisions kept her squarely rooted in small town America. 

Mom was only 74 when she got her diagnosis and when I think of the speed of her decline from the event that I believe precipitated her acceleration, I am nearly speechless.  I think there were signs earlier but it became clear that the sense of purpose she had caring for her husband, my stepdad, as his health declined, coupled with his guidance (he was mentally very sharp), kept her steady and less symptomatic.  With his passing in May 2017, the door for the disease to take hold and progress quickly was opened.

I am fortunate.  Although it has been a really hard and stressful journey negotiating the doctors, the various care communities (AL, MC, skilled nursing, Private Pay..etc. ) , the legal concerns, the selling of her assets, the reality that she WILL run out of money, and I could go on...those challenges - and they are real challenges - pale when it comes to the storm of emotions I go through on a daily basis.  I am just sad. 

My older brother is sympathetic but totally removed physically and emotionally.  My younger brother is able to be more empathetic because he is closer physically and does help with major decisions and POA activities etc. but he is also recently married and just became a first time father.  He has his whole life ahead of him and needs to focus on that. 

That leaves me, the childless professional, long married and supposedly settled, and physically closest to tend to mom.  And tend to her I do, at the cost of having lost one job and risking my own marriage.   Thankfully my husband is patient and has his own baggage so we know we are bound to persist and support each other through it all. And to be fair, I choose to be this involved.  I don’t know how NOT to be. This is my mom!

But I often wonder if I am strong enough to handle the sadness. 

My mom doesn't deserve this. My mom; the sweet, giving, persistent hero in a typical story of growing up in a time when women didn't have the same opportunities, but who did her best not to play the victim and to just be the wonderful lady she is. 

No one deserves it.  

Up until about 3 weeks ago, my mom would still look me in the eye and I could see the undeniable recognition there.  She knew I was her daughter and that I loved  her and she loved me back as deeply and strongly as I do her.  Not all the time, mind you...but often enough that I could cherish that look, the strong hug in return to my own desperate embrace.  

I haven't had that in weeks now and it is tearing me up.  When I visit (she is in a wonderful Greenhouse Project community that I fought long to get her into) she seems to know vaguely who I am but shows very little emotion aside from perhaps a little annoyance that I keep asking her questions and trying to get her to engage with me.  The transformation from someone who used to talk my ear off at any opportunity to someone who won't answer the phone, and barely talks to me is heart wrenching. 

And I have been expecting this for some time now.  Right?  We - the loved one, the care givers, the daughters, sons, spouses etc. - we all know the story and how we will be forgotten.  And yet as much as I have tried to prepare myself for this, it doesn't help.

And remember, my mom still knows who I am.  But it is as if she no longer has feelings or emotions vis a vis me...unless maybe it is resentment or anger.   And yet I think that too is my just my imagination and anxiety kicking in.   But I have seen her respond to other people with some semblance of emotion - fake or real I cannot be sure.  She has been adept during her decline at 'hiding' her weaknesses with a smile and some banter.   But it seems like she reserves that for people she doesn't know well.  I sometimes think that with me she is simply too tired to keep on faking it. 

And so it goes.  I visit often, hoping for some change, a flicker of passion or comfort that I am there.  She continues to accept these visits, as if they are from an annoying, in-your-business neighbor. 

And I wonder how long this phase will last and what will the next one look like. 

And I miss my wonderful, precious mom, whom I love to the moon and back. 

Posted: Sunday, January 5, 2020 5:47 AM
Joined: 1/5/2020
Posts: 1

I too am experiencing a new phase with my mom, as she is beggining to Sundowndown. While I long for this stage to end, the sleepless nights, phone calls from the care facility which make my heart drop to my feet, her borrowing things from others without asking because she thinks that it is hers and THEY stole it- I know that another will come and it will be closer the end.

My mom had a pre-diagnosis more than 10 years ago, but as most people with dementias she would not trust the suggestion to seek help. I unfortunately did not know a thing about ALZ because no one I had been close to had it. I now know the signs were there as much as 20 years ago. It has progressed fairly slowly. 

I truly want to lick myself every time I connect a sign that she gave and I could've helped her, had I known and she hadn't been so stubborn and asked for help. 

We can't go back and that kills me inside even more.

MMy mom is starting to not recognize where she is. She hallucinates and believes she is seeing where she lives, her belongings, people she lives with. It's heartbreaking. 

She consistentlya for and item that she believes her sister sent or brought to her that she never even owned in the first placed. She also has not seen her sister in a number of years because she is not well enough to travel either. She has not been able to speak to her in nearly 4 years. 

I am rest broken because she was allowed to visit for the holidays, but I cannot get her to settle down and go to sleep. She gets up and wanders around the house, picking up random things and putting them in her pockets, under her blanket or in her basket,h all the time crying and muttering to herself. She is fond of socks. This will last for hours. If I ask for an item, and put my hand on it, she yells that I'm snatching and she throws it. She nearly broke my phone. I was firm with her when I said that it was unacceptable, so as of now, I am back to being the bad daughter who lied and let them tell her she is sick, and the good daughter is the one who has done nothing but make her feel horrible and wish her dead. 

I cry sometimes, but I grieved for her for a little over a year. I know I will lose her one day. She will not know me at all and she will no longer remember ever again. It hurts like crazy. I am helpless to fix it. 

I say all of this to say that you are not alone and we understand. While she is in a home, my aunt and myself are the only ones who regularly take care of her. They can only do so much. Always seem to be short staffed.

I have heard that I chose this burden and I feel that it is unfair to call her that. I certainly hope that as a child needing a parent that I was not a burden to her. The tables have turned and I am happy to do it. It's hard, but I do it. 

Anyway, if you need to talk I'll be here from time to time. Probably more often than I think. 

Hang in there. 

Posted: Sunday, January 5, 2020 9:55 PM
Joined: 4/6/2019
Posts: 2

Thank you for adding your experience and helping me to know that I'm not alone.  I know the feeling when the phone rings at an odd time and your heart drops. 

I will keep you in my thoughts. 

Posted: Sunday, January 5, 2020 11:06 PM
Joined: 1/25/2018
Posts: 687

Although I'm still managing my DW at home, I understand exactly what you posted. I don't think my DW is able to feel the love that existed for us over 35 years. Just like meal planning, enjoying her favorite show on TV, doing her crafts, loving me is only a faint echo of what it was. It's like she remembers feeling something for me, but no longer understands what it was.
Angie K
Posted: Monday, January 6, 2020 7:45 PM
Joined: 1/6/2020
Posts: 1

Thank you for sharing your struggles. I deal with my father and Vascular dementia...or something of that sort. Tonight was rough and I cried the rest of the evening after talking with him on the phone.  It's so strange that he still knows so much but has such horrible delusions, hallucinations, and paranoia.  Some days he seems so normal, some days are extra bad like today.  Helpless is the best way to describe how I feel most often.
Jo C.
Posted: Wednesday, January 8, 2020 9:11 AM
Joined: 12/9/2011
Posts: 11601

Hello new Members and a very warm welcome to you; you have found a soft place to land and will find much support on ALZConnected.

While we may Post on any Forum we wish, I would like to share that this is a "Musing" sort of Forum and not as focused on care issues and problem solving, so the input on that front will be less.  Musings is not as well attended and also does not have much "traffic" on that front so to speak.

If one Posts on the  Caregiver's Forum or Spousal/Partner Forum, there will be far more input and assistance as well as understanding emotional support  if one wishes that as those Forums are far more busy with much more Member iput support.

In any case, wherever one wishes to Post, the welcome is still the same.

Best wishes and warmest thoughts being sent your way,