New decline….this one is very hard

Smyles7720

Hello everyone, 

Dementia  is all about your loved one losing abilities to function.  I have read articles attended workshops (in person and virtual) about the coming changes and thought I was prepared. I am prepared mentally, but emotionally I am unprepared and hurting.

First of all, mom is using more single words and less sentences. Sometimes, when I talk to mom she just looks at me and I wonder if she understandings what I am saying.  I use more gestures with my hands  to communicate now.  I never took notice of the change  because mom was always busy sorting her magazines and looking at the pictures. I thought she was lost in her magazines for her lack of words.  Sadly, even without her magazines there are fewer sentences and more single words. Secondly, I found out mom has spinal stenosis. Mom has pain in her lower back and it is difficult for her to walk. Mom takes medicine to control the pain however she does walk. She can stand up using the walker, but sits right back down.  Mom never used a walker before  so it’s hard to navigate walking with walker.  Without the dementia mom would try walking (I think) but dementia makes the simple things complicated and difficult. 

I miss hearing her walk around the house and calling my name to look at the tv shows. I can handle mom not walking a little better, but the not talking is harder. Mom loved to talk. We could talk for hours, changing topics and making each other laugh. Dad loved to hear mom talk too. He we say things just to get her going in a conversation.  

The only footsteps I hear are my own and the silence is not filled with Mom’s voice. 

Right now I am grieving and hurting. Every morning I cry when I wake up and cry when I go to bed. The beginning of the holiday season makes it even harder.

Thanks for allowing me to express my pain.

SusanB-dil

Hi Smyles7720 - yeah, agree, it hurts - we hear you.  Each step of 'this' just bites.

mommyandme (m&m)

I hear and feel you.  My mom always talks now, she did before also, but now there’s no sense in what she says. I so wish I could understand her.  There was a time that I’d ask things with hand gestures and also an interim time when she stopped talking.  I think it’s important not to point out that I couldn’t understand. She’s not concerned she’s saying things I can’t understand. She just converses and I try to react appropriately. I know I’m not always successful by the way she looks at me.  

It’s so hard to lose our LOs this way.  I’m terribly sorry for your heartbreak.  

jfkoc

Loss is dufficult and with each loss we do experience grief. Some days the grief is not apparent...other it can be overwhelming. You are never going to control it...sorry but it will hit you from out of nowhere.

Your mother may have a hearing loss. It would be good to check that out. Additionally she will be having more and more difficulty comprehending and a los of hearing will add to that.

Always try to be at eye level, make eye contact, use simple sentences, use a low toned voice, speak slowly and allow time for comprehension.

Pain is hard to control. My family uses "gummy edibles" for pain. We have chosen that over drugs due to all of the side effects and black box warnings.

We do our best but that does not mean much some days. Enjoy your mother by joining her with what she is able to do. I know this means slowing down and that is not so easy to do but please try so that you are sharing at least part of your day.

Added: If what you are talking about has come on rather suddenly then a test for a UTI must be done ASAP.

Letz talk

This is my first time on this site, for years I’ve tried to handle this on my own feeling weak if I couldn’t but my mom has now been in a facility for a year now and she’s declining in front of me. The staff has gotten to know me and I’m familiar with the the facility some what. This last year has been up and down to say the least. I never thought I’d see my mom like this. She at the stage where she won’t eat her food because she thinks she has to save it for dinner later ! So disheartening to see

Mint

Smiles I’m so sorry.  Many of us on here cry a lot.

Malka

Every day for the last few years.

Smyles7720

All of you you did not have to share your journey, but you did……..Thank you.

Ed1937

Symles, jfkoc has given you some good points to consider. Hearing loss in people with dementia is a real thing, and might be worth checking.  "Always try to be at eye level, make eye contact, use simple sentences, use a low toned voice, speak slowly and allow time for comprehension." This is also good advice.

I'm giving you a link that might be helpful to those of us experiencing losses of our loved ones. I hope it helpful. How to cope with the grief and loss when you love someone with dementia I'm sorry this is so hard for so many here.

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