Tough month

GothicGremlin

It's been a tough month, although Peggy has remained relatively calm and cheerful in spite of everything. She's now at later stage 6 and it's still the slow progression, no falling off cliffs.

Even so, some of the new behaviors are distressing, even if not unexpected. Peggy is starting to have delusions. She saw a man standing at the exit door of memory care but told staff she knew he wasn't real. She was frightened by it and ran away down the hall. Part of me was kind was glad to know she can still run, but most of me was quite alarmed by the whole thing. I met with her doctor and we're keeping her meds the same for now given that so far this event seems to be a one-off, and that in general she's calm. I'm sure delusions will be the new normal in about 6 to 8 months.

Peggy also had a day where she didn't recognize her best friend, M. He called me, quite rattled, and told me about it. He said that whenever he goes to see her, there's a lot of Peggy's personality present. This time there was nothing. Once she came out of the fog, she recognized M. That was about two weeks ago, and there hasn't been a repeat, but again, 6 to 8 months from now it'll probably be the way things are.

This last weekend I emptied out the storage space where I've been keeping most of Peggy's stuff. She's never going to use most of anything that was in there. I'd been agonizing over the last year about what to do with everything. Finally it was just time. I kept some clothes that I know she'll be able to wear (sweaters, mostly). I kept a couple of stuffed animals, but most everything else I gave away to friends/family, threw away, or shredded. I've been feeling enormous guilt over getting rid of so much (good thing I have a therapist!), but I'm now starting to feel a little better about it all.

Some things I was surprised she even still had - an elementary school spelling book (4th grade, maybe?). I didn't feel bad about tossing that. It was her junior high school yearbooks that I felt really bad about. Her ex-husband burned her high school yearbooks when they got divorced (such a d*ck). But because of his actions, I really had to sit down with myself and make sure it was okay to get rid of the rest.

In spite of feeling horrible and guilty, I know I did the right thing. I got rid of the monthly cost of that unit, which seemed to increase every three months, and now I have the universe of Peggy's stuff at home where I can see it, and swap out clothes/shoes/stuffed animals much more easily.

I've been prepping for NaNoWriMo for the month of November (national novel writing month). I'm hoping that even if I don't get 50,000 words written, the whole process will help keep me distracted from my creeping dread of the next six months or so.

Quilting brings calm

I’m so sorry GG.  The feelings of guilt for what we do/don’t do, dread of what’s to come, stress and sadness of what is happening now just weigh me down so much that I accomplish nothing. It sounds like it’s been the same for you in terms of her possessions.   I often wonder if I’d do better if I didn’t know anything about the various possible paths to come.  I know experienced people say each patient is different and many never exhibit certain behaviors, and not to worry unnecessarily.  However that is easier said than done once you see that behavior happen once in your orbit. 

I wish I could say something  to make you feel better. 

ninalu

Hi Gothic Gremlin,

I'm sorry it's been a tough month.

I've found sorting through my mom's possessions challenging. There's a lot of stuff and each time I try to do it, something I see pulls me into memories and it's all very time-consuming. Most people I've known do this sifting process after their loved one is gone. Maybe doing it while our loved ones is alive feels different? I don't know, but I'm sorry that you feel guilty. 

The loss of recognition hit me hard the first time it happened. It comes and goes now and definitely feels easier than it did at first. I can understand how someone would dread it in advance of it happening. Honestly, even though I knew it was a "thing" I found it impossible to understand until it happened. Then it happened and it was a "wow, I need to sit down and process this" moment. Nothing could have prepared me for it. I was giving her a hug and suddenly she looked at me blankly and said, "who are you?" It was like entering a new dimension. A lot of the journey has felt like that - like traveling to new dimensions. 

I'm glad you have writing - I hope that proves to be a great and engaging activity   

abc123

Dear Goth, Peggy is very fortunate to have you as her sister. 

I understand how hard it is to go through our LO's belongings and clothes. I had to go through my mom's toiletries and makeup when we sold the house in Texas. I had to toss it all. It had been years since she used any of it. I felt lower than low.

I think its GREAT that you are prepping for NaNoWriMo!!!!! Go Goth! Go!

Iris L.

GothicGremlin wrote:

Even so, some of the new behaviors are distressing, even if not unexpected. Peggy is starting to have delusions. She saw a man standing at the exit door of memory care but told staff she knew he wasn't real. She was frightened by it and ran away down the hall. Part of me was kind was glad to know she can still run, but most of me was quite alarmed by the whole thing. I met with her doctor and we're keeping her meds the same for now given that so far this event seems to be a one-off, and that in general she's calm. I'm sure delusions will be the new normal in about 6 to 8 months.

I hope she is not watching TV or movies, especially this month when people may tend to focus on the spooky.  Last night I dreamed about a witch--I know that came from something I heard on the radio, because I don't watch tv.

Peggy also had a day where she didn't recognize her best friend, M. He called me, quite rattled, and told me about it. He said that whenever he goes to see her, there's a lot of Peggy's personality present. This time there was nothing. Once she came out of the fog, she recognized M. That was about two weeks ago, and there hasn't been a repeat, but again, 6 to 8 months from now it'll probably be the way things are.  

Out of sight, out of mind.  Can he keep in contact more often?  I think this type of forgetting of people is unavoidable.   I forget people, it's a problem. 

 

This last weekend I emptied out the storage space where I've been keeping most of Peggy's stuff. She's never going to use most of anything that was in there. I'd been agonizing over the last year about what to do with everything. Finally it was just time. I kept some clothes that I know she'll be able to wear (sweaters, mostly). I kept a couple of stuffed animals, but most everything else I gave away to friends/family, threw away, or shredded. I've been feeling enormous guilt over getting rid of so much (good thing I have a therapist!), but I'm now starting to feel a little better about it all.

There are people who will be happy to have your sister's things, because they have nothing.  Yea for you!  Feel proud that you accomplished this needed task!

Some things I was surprised she even still had - an elementary school spelling book (4th grade, maybe?). I didn't feel bad about tossing that. It was her junior high school yearbooks that I felt really bad about. Her ex-husband burned her high school yearbooks when they got divorced (such a d*ck). But because of his actions, I really had to sit down with myself and make sure it was okay to get rid of the rest.

In spite of feeling horrible and guilty, I know I did the right thing. I got rid of the monthly cost of that unit, which seemed to increase every three months, and now I have the universe of Peggy's stuff at home where I can see it, and swap out clothes/shoes/stuffed animals much more easily.

I've been prepping for NaNoWriMo for the month of November (national novel writing month). I'm hoping that even if I don't get 50,000 words written, the whole process will help keep me distracted from my creeping dread of the next six months or so.  

Best wishes to you! 

Iris

Iris L.

GothicGremlin wrote:

It's been a tough month, although Peggy has remained relatively calm and cheerful in spite of everything. She's now at later stage 6 and it's still the slow progression, no falling off cliffs.

Even so, some of the new behaviors are distressing, even if not unexpected. Peggy is starting to have delusions. She saw a man standing at the exit door of memory care but told staff she knew he wasn't real. She was frightened by it and ran away down the hall. Part of me was kind was glad to know she can still run, but most of me was quite alarmed by the whole thing. I met with her doctor and we're keeping her meds the same for now given that so far this event seems to be a one-off, and that in general she's calm. I'm sure delusions will be the new normal in about 6 to 8 months.  

I hope she is not watching TV or movies, there is too much scary stuff on now.

Peggy also had a day where she didn't recognize her best friend, M. He called me, quite rattled, and told me about it. He said that whenever he goes to see her, there's a lot of Peggy's personality present. This time there was nothing. Once she came out of the fog, she recognized M. That was about two weeks ago, and there hasn't been a repeat, but again, 6 to 8 months from now it'll probably be the way things are.  

Out of sight, out of mind.   Can he be in contact more often?

This last weekend I emptied out the storage space where I've been keeping most of Peggy's stuff. She's never going to use most of anything that was in there. I'd been agonizing over the last year about what to do with everything. Finally it was just time. I kept some clothes that I know she'll be able to wear (sweaters, mostly). I kept a couple of stuffed animals, but most everything else I gave away to friends/family, threw away, or shredded. I've been feeling enormous guilt over getting rid of so much (good thing I have a therapist!), but I'm now starting to feel a little better about it all.  

Feel proud that you accomplished an important and often very difficult task!

Some things I was surprised she even still had - an elementary school spelling book (4th grade, maybe?). I didn't feel bad about tossing that. It was her junior high school yearbooks that I felt really bad about. Her ex-husband burned her high school yearbooks when they got divorced (such a d*ck). But because of his actions, I really had to sit down with myself and make sure it was okay to get rid of the rest.

In spite of feeling horrible and guilty, I know I did the right thing. I got rid of the monthly cost of that unit, which seemed to increase every three months, and now I have the universe of Peggy's stuff at home where I can see it, and swap out clothes/shoes/stuffed animals much more easily.

I've been prepping for NaNoWriMo for the month of November (national novel writing month). I'm hoping that even if I don't get 50,000 words written, the whole process will help keep me distracted from my creeping dread of the next six months or so.  

Best literary wishes!

Iris

GothicGremlin

Thank you all for your comforting words. I really appreciate it, especially when my own thoughts are all still jumbled.

Now that I'm a week away from finishing up sorting all of Peggy's stuff, I have a bit more perspective. I know it was the right thing to do, and better to do it now, then later, even if it's painful.

Probably the reason why I feel this way is because my brother left all of the sorting of our parent's possessions for me and Peggy to do back in 2015 after my dad passed away. My brother washed his hands of all of it. We sold my parent's house in 2020. Since my brother was still living there, we couldn't really get rid of furniture and kitchen things before that. Of course he washed his hands of all of that too. Peggy was diagnosed in 2018, so by 2020 she wasn't able to help much, so I did most of the sorting and clearing alone. I won't lie - going through my parent's stuff and Peggy's stuff, with all of the emotions that go with that, has made me emotionally weary. Maybe it's a cumulative effect.

Iris, Peggy's friend M goes to see her every other day! And he brings her chocolate! That man is an angel. If he had a physical halo, I'd polish it for him. Team Peggy consists of me, M, and Peggy's friend from kindergarten (!!) D. The three of us take turns visiting and plotting ways to make things as good as we can for Peggy. She may be unlucky in getting Alzheimer's, but she hit the jackpot with her friends.

Quilting -- you've made me feel better just by writing.

ninalu and abc123 - thanks for egging me on with nano. I've been outlining for weeks in my spare time. I'm hopeful!

CatsWithHandsAreTrouble

Oh Gremlin! I'm so sorry things are getting tough for you. It's always distressing whenever we notice the next step in the disease showing up. I'm glad that you have a therapist that you can turn to to help sort through your feelings and conflictions.

I'm also doing NaNo! Been doing it ever since around 2008. I'm not sure I'll get very far this year, but it's about having fun. Don't hold that 50k goal as a threat, okay? Any amount you get is fine.

Kay82

My thoughts and prayers are with you.  It is difficult to decide sometimes when is the right time to do this or that.  I think sorting thru possessions prior to a LO's passing is part of the loss process. I feel, after a LO's passing is the time to process your grief, not sort thru possessions - just my thoughts. 

You stronger than you think. 

GothicGremlin

Thank you Kay82, I very much appreciate the buck up! I knew that I needed to do the sorting process now-ish, the thought of it later was just becoming too much.

CatsWithHandsAreTrouble - if you see this - good luck yourself!!! I did nano once about 10 years ago and reached the 50k goal. I learned from that process that I need a detailed outline. I'm also pacing myself.