this disease sucks (warning! venting inside!) - tired of her being stolen from me little by little

smbren

I knew my LO, my mom, has been progressing.  I've suspected she has been regressing as well.  I've suspected this for a few weeks and didn't let on to anyone else as the rest of the support crew, well, is either emotional, a basket case or just not there, or some times over reacts before we know for sure what is going on with her. 

Today, she didn't believe she had a daughter. Had trouble recogonizing my dad (50+ years of marriage).  When I got there, she recognized me, and then things seemed to settle down.  I had to explain to my dad how she was regressing and was probably back in time to a point before they had kids.  

When having her tell me what was the matter, one can really see how cruel this disease is.  As it's not her just telling me what the matter is, what she is feeling or thinking inside her head at the time, but that she realizes what is going on as well.  Telling her I'll be there with her every step and then her telling me she doesn't know if she will be and then having her cry.  And then holding her and telling her it will be ok. And she feels so lifeless as I hold her. 

I'm sick and tired of how this disease is stealing her from us little by little.  Steal some memories.  Steal some more.  Steal the short term memory.  Steal real time memory, who are you?  Slowly steal the motor skills.  Sick of watching what it is doing to her.  What it is doing to my father as he would do anything to help her and isn't able to.

It's slow.  It's painful.  It's torture.  I am tired.  But I will stand by her every step of the way, no matter how difficult it gets.

Vent over

Michel2020

I am new to this as my mom has stage 1 of Alz...but this group is helping me out a bunch...and it is also good to see that other people need to vent from time to time. Hang in there and know you are heard.

smbren

Thanks Michel2020 and welcome to the forums.  There are many great people here who offer great advice when you run into something new that is happening to you.  Almost guaranteed that someone here has experienced something similiar with a LO. 

I am having a particularly difficult week as things are progressing.  And it is involving regression and her memory has become an issue as far as remembering my sister and her husband of 50+ years.  And then when I'm there, it's like she wakes up and she remembers part of it, so I am watching the pain that she is feeling as she realizes in part that this is happening. I've been exchanging msgs with the geri psych for the last few days and we see her tomorrow.  I'm not sure I really want to increase meds as she already is starting to doze a lot of the day and the knock off early in the evening.  So I don't really want to have her in la la land due to meds, but I also don't want her afraid during her waking times either.  It is such a frustrating balance.

LicketyGlitz

Vent away, smbren! It's what we're all here for!

I wanted to let you know our experience with Mom's geri psych doc was so awesome. Dr. Susan talked over all medication possibilities each time we reached a new behavior Mom (and ourselves) were struggling with, and worked with us for weeks to get the right dosage amount/time to make sure we weren't zombiefying her while giving her some relief. I bet your geri psych will be equally as helpful, and if they aren't... hound 'em!

You know, I always see the phrase about how hard it is to lose someone who's still alive or some such wording and I think that they've got it all wrong. For me the hard part is celebrating the person who is changing dramatically and sometimes so rapidly I can't catch my breath! The scene of you comforting your mother is so potent, it made me think of when my mom was at that point, and how I struggled to comfort her, let her have her tears, find a way to make her smile and know that while it wouldn't be okay, it would be what we made of it and we were gonna make the best of it we could.

I send you, your mom, and your whole family strength, patience, and a box of smiles that you can hopefully pop open and share during these hard days.

smbren

LicketyGlitz Thank you for all your words. 

Celebrating the person is true.  I have been doing my best the last 4 years to find ways to spend time with my mother, to make that time meaningful while I could, before things got to far along. 

As her son, one of my favorite things over the last few years since we took her car away was taking her and joining her for what I termed 'Ladies's Lunch'.  This was lunch with her 2 best friends, and occasionally one or two other ladies.  Her 2 bff's are like second mom's to me and were ecstatic to have me join them.  I felt a little out of place (ok, a lot) the first couple of lunches being the only guy there.  But I really came to enjoy this time with her.  And it was quite a few lunches in when we were booking it and I mentioned the term 'Ladies Lunch' and I never realized I never spoke it to them before that.  They were all a bit like deers in headlights, what???  But then everyone started putting it in their phones as Ladies Lunch.  But even through the hell I've been living, I've managed to make lemonade out of the lemons as they say. 

We also through her a 75th birthday party that I organized.  This was before she was getting too bad.  But I wanted a couple things out of this.  One, I really wanted to give her a chance to see family and friends while she still was able to recall everyone.  And secondly, while most people at the party didn't know her situation yet, I wanted people to have a chance to come celebrate with her and see her before she started to decline. 

And tomorrow, before we go to the geri psych, I plan to make us some banana daiquiri's!  Don't worry, they will be non alcoholic.  But this was something she always enjoyed when they went on vacation with us, hoping it will put a smile on her face during a rather tough week for her and us. 

ADH77

I really appreciate @LicketyGlitz's notion of celebrating the LO with dementia. That's a really amazing way to view the situation. I will work at doing that more. I can also see why that's a challenging course, since, in my case, my LO is no longer able to celebrate me, since she has no idea anymore what my life is, although, thankfully, she still remembers me. But nonetheless, I think it's a really good framework, so I too am feeling like I've lost my mom, even though she's still alive.

I agree it's really hard to watch a LO lose memory, cognitive and functional abilities due to this disease. My birthday was a few weeks ago, and my mom  always used to call me on my birthday and sing happy birthday to me. It was a sweet moment I always really looked forward to. It's been years since she's done that, since she can't anymore, but I am grateful to have my husband, his family and my friends who all sent me many birthday wishes (especially my husband who ordered a really amazing dinner for us!). 

While venting on this forum is a great way to express your feelings to people who have been there, I think it's also important to have a good support network IRL. Going through this with my mom--who is my only blood relative who is present in my life--has made me appreciate how important having good friends is and I am grateful for their support and concern. 

smbren

And to that point, while this week has been tough for my mom, I managed to get her to smile yesterday and today.

Yesterday I made her a non alcoholic banana daiquiri.  Something that she and I would both enjoy when my wife and I would bring my parents on a cruise with us.  She really enjoyed that.  A small treat that did wonders for her spirit.

Today, my new tech toys came in which also raised her spirits.  2 new Amazon Echo Show 10's.  1 for their house and 1 for my house.  She was nervous about being able to use it, nervous about remembering the commands, etc.  But I wrote down the important ones, like call son at home, do photo show, etc. 

The video part with me, was great!  And adding the photos for a digital picture frame was priceless!  She was mesmerized by it and watched it without looking away.  I saw the smile sneak out with some of the pics.  I am now in the process of getting more pictures loaded. 

Don't tell Amazon, but I would have easily paid 5 times as much if I knew she would have gotten engaged like this.  At her current cognitive abilities, I don't how much longer this will last, but I think being able to view the pictures will last.  And my dad can help initiate the calls to me when needed and she'll have me on video to stimulate her mind.  And if I call there, I don't need to worry my dad is about as I can 'drop in' so she doesn't even have to answer as it will be automatic.

Some times, technology can be a nuisance to our daily lives.  But this time, it really is helping me with my mom.   

Stori

I am holding space for you and your mom.

Schmail13

As I'm reading all your posts, I feel like I am reading my own.  Then I see that you are the son, not the daughter as you more typically see and think 'this man is wonderful!'.  I truly feel your pain & wish you the strength to get through this.

smbren

Schmail13 Thanks for your words. 

I too have so many times read a post and thought those could be my words exactly.  And feel the exact pain someone else is feeling.

Since the start of this post, this is only getting worse and seems to being doing so at a rather quick pace.  I've accepted the diagnosis and understand the progression a long time ago.   The hardest thing right now is her being in that in between phase.  She is aware of the memory loss and this is obviously very upsetting.  So it is so difficult to keep it together in front of my parents, even while holding my mother as she cries until she forgets why she was crying.  It breaks my heart over and over not to just see her go through the disease, but to see her suffer with the understanding and with terror I see in her face before the disorientation and confusion start to lift.