Grieving the changes

Salsam

How often do people visit their LO?  In my case they moved exactly 3 months ago. 

Then 2 weeks ago trauma with my dad...and now many wonderful people helping me.  The hospice nurse has been changed (and I like this new one) 

When I take my dad out, he doesn't want to go back...but he does...the last time I called his cousin and he talked to her....completely lucid with the cousin...that is what breaks my heart.

They have adjusted his meds, and I think I will feel much more comfortable talking about meds with this new hospice nurse...

My dad hates crowds, and has screamed LOUDLY he does not like being with all these crippled old disabled people.  I talk to him quietly and whisper that we all need help...then he apologizes and forgets immediately. 

One of the caregivers is perceptive, and she takes him often to the back room where it is not crowded...the crowded activity room he does not like.  

Has anyone ever brought their LO back home?  I don't want to do this...I think he would still have increasing anxiety and not sleep and have bad dreams and problems with bathroom which is why he is there.   I did not move them until it was just too much to care for them in my home.

I do not miss the care.  I grieve the days, even 8 months ago when it was rewarding to take care of them WITH HELP, but not help all the time. 

He is also grieving my mom in a way...my mom is there, too, a different room because they are divorced...but she gets upset when he yells, has hearing aids, so mostly they have to keep them apart.  I take her walking outside because she loves it. He screams that her brain has gone "ALL TO HELL." She cannot hear well or see well (macular degeneration) so he doesn't understand that she has extra problems --she does know who he is and who I am, but only if I am right in front of her...one day she was crying and so glad to see me because she thought I had died. 

I take him for rides in the car because he loves that....I take them separately. 

I took a former caregiver with me on Tuesday...and I have wondered if it would help to pay her to go a little bit...a couple days a week.  My mom did not remember her name but she told her, "Of course I know you.  You pay attention to me, and all these other people just walk by!" 

I do have now, the person who bathes them from Hospice reports to me that they are doing OK after bath time. 

Is it better to go less often?  Thinking about them takes up 80% of my brain.  I am off for the summer by next week,  

I am going about every other day, but not on a schedule...If they are super anxious when I leave I don't feel like going back. 

Any experience or advice shared is appreciated. 

Justagirl

Hello! I’m new here. My mom was just diagnosed with Alzheimer’s dementia and all of this is very new to me. My mom is just going to be finding out her diagnosis next week. I have no idea what to expect. I truly think she will be in denial. I’m simply looking for ideas how to be there for her and let her know that I am here for her. All my life my mom has said “ If her mind ever goes she doesn’t want to be here!” She’s very stubborn and independent and always has been. 

I am glad that I found this group and hope to learn about what we can expect in this journey,  as well as be able to talk to others who are going through the same. 

dayn2nite2

Stop taking your father out if he is not wanting to go back at the end of the outing.  If that means you can never take him anywhere, then so be it.  

Do not bring him back home, things will be no better for him there and the majority of the care will be you again.  

He will adjust eventually.  Let the staff deal with his outbursts.  

If they are divorced, why did your father get placed in the same facility as your mother?  Isn't there any way to keep them separated in the facility during the day?  If he hates crowds, why can't she spend lots of time in the common areas where people are and he can be in quieter areas?  Why is he being given an opportunity to yell about her brain...ever?  They need to be separated for her peace.

M1

Hi justagirl,glad you found us. Read lots of threads and if you want to start a new one hit the green "start topic" button towards the top of each forum page.  Learn first about anosognosia-   it's not denial but a true inability to recognize that there's something wrong. Good luck-

star26

I think that working towards visiting once a week might be a good goal. I really like the idea of hiring the caregiver to visit especially if that makes it easier for you emotionally to not visit on those days. 

King Boo

I visited once a week because that was what was do-able.  My LO really didn't like having his schedule disrupted and often wanted me to leave quickly.

Care staff was always OK with an additional check in by phone.

I was lucky - great caregivers, great facility.  Staff relationships I could count on.

Salsam

Hello Justagirl, 

The changes are so gradual...don't worry about the diagnosis.  My dad had an official diagnosis in 2015 and always told people he was fine.  He lived with me for 5 1/2 years before I was unable to care for him at home anymore.  My mom never wanted a diagnosis because my grandmother died of Alzheimer's at age 100 and my mom cared for her from 90-100.  This care included my mom caring for my grandmother in my mom's home, then an independent living facility until that was dangerous and finally a nursing home.  Now that I write this...I am having empathy for what my mother went through a generation ago...at that time I was a bit protected by the generation in between...I took my kids to see my grandma every summer....I was very close to my grandmother...but all the stages of change were easier to accept because I was a busy young mother...and my mom would tell me "Your kids are growing up, and my mother is growing down."  

Dimentia/Alzheimer's is mysterious...each person has their own story....today I had a good visit with my mom...When I got there the caregivers told me she was a bit agitated...she was wandering around talking and talking, she was somehow in her past world...(she was a kindergarten teacher) and I told her let's go for a walk...I took her in the lobby and played the piano for her...she started singing the Itsy Bitsy Spider...and she was happy...and other residents interested too....but it was 6 minutes of piano...and then a walk outside...and she used up energy and calmed down when I took her back inside.  

I didn't wake up my dad, just got a report from the Hospice person who bathes him that he was ok today...they have done a good job of adjusting his meds I think...it is one day at a time.

I can honestly tell you I enjoyed having them here with me for 5 years!!!  This site is helping me realize all the stories are similar but unique, too.   

Justagirl

Thank you so much for sharing. 

God Bless you and yours!

Justagirl

Thank you for sharing!