what I've learned - 1

piozam13

DH was first diagnosed with MCI in April 2019.  I knew he had memory and judgment lapses several years back, but I couldn't get him to see a doctor.

I've learned a lot from this forum and further readings.  I was not so active as I felt I had nothing to add to what had been posted.  I believed DH was in stage 5/6 but I observed quick changes to Stage 7 after falling down last Christmas.  

DH was 76 [I'm 73] when he was called to join our Lord January 5, 2021.  I was by his bedside at the hospital.  Way too soon, but I feel he's in a better place, at peace and free from pain.  What I've learned;       

1.  DH became very sensitive to my moods and stresses.

When I had problems  for example, arguing on the phone over a transaction on my credit card, instead of being supportive, he became mad and abused me verbally.  He would tell me he would rather be alone because I brought all the problems to our relationship.  Many other nasty things were hurled to me. so uncharacteristic of him.  No matter how apologetic/how calmly I would explain, he would hear nothing of it.  These were the most difficult times for me.  I was just learning about the disease.

Realizing he was no longer reasonable, I had to make the change. The doctor doubled the dosage of his meds, and I no longer made phone calls in his presence.  I had to appear 'everything was fine.'  I'm sure many of you can relate to situations like these.

2.   Following a routine was helpful to DH and to me as well

DH would call me as soon as he got up and start with  'where are we, why are we here, I want to go back home, I want to die.'   He was totally confused, frustrated and scared.  Sometimes he could say, 'everything is foggy.'   That's when assurances of 'I love you, I'll always be here for you, small kisses/embraces' were helpful.  When he calmed down, he would;  -go to the bathroom to shave/shower, get dressed, -make the bed, -take small bag of  garbage to the dumpster, have coffee and small serving of fruits, -have 5-10 min of head massage, we go for a 15 minute walk.  The walks were the most important part.  Even if he didn't  get up in a good mood, he could be whistling or singing on the way back.  In the afternoon, we would go for a walk before sunset, have a light meal, have a longer 15-25 min head massage, take our meds before retiring.

These routines seemed to ease the dawn/sunset downing.  Everyone is different.  I wonder what your schedule is like.

3.  Agreeing to or fibbing is less stressful

For example, he would say he had taken his meds already, why was I giving him more.  If I had insisted that that wasn't the case, he would be mad and a long argument would ensue.  He also made up stories about his brother, he would tell me names of  trees and flowers we see as walked around.  Nobody gets hurt by these, so I would go along knowing fully well what he was saying weren't true.  Who really cares.  

Not easy to do at start but you'll get used to it.

I'll pause here.  I may add more of what I've learned  some other time.  Probably someone may be interested to know my experience at the hospital, hospice, grief.

Writing down my thoughts is therapeutic for me.  Many thanks.  

Cynbar

Thanks for posting those updates and reflections. I think for those of us still in the battle we sometimes have a hard time keeping perspective, Please, keep them coming. I know I often see a situation much clearer when I am looking at it in hindsight.

mrl

PIO you are right on track doing everything perfectly,,, don't doubt yourself,, honest you're

doing fine...

Ed1937

piozam13 wrote:

For example, he would say he had taken his meds already, why was I giving him more.  If I had insisted that that wasn't the case, he would be mad and a long argument would ensue.   

Would you mind telling us how you handled that? I hear that most every day. I try to make a really weird voice, and tell her she didn't take them yet, and she needs them. She laughs, then takes her meds. Keeping the mood light seems to work pretty well for me.

I am truly sorry for your loss. Thanks for sharing.

piozam13

Thanks Ed,  

I was careful not to challenge DH.  He was challenging me too.  He'd say, 'I'll write it down so that you don't forget.'  

I let it go for a while.  He forgets anyway.  'This med is  taken before bedtime'.   Sometimes, I didn't even have to say that - he would take it when I turned my back. 

You are right.  Don't get upset.  He's not being difficult.  His memory and time perspective are gone.  When he says he has just taken them - he remembers taking them.  But not that he took  them yesterday. 

jfkoc

Thank you for the very helpful post. How are you doing?

piozam13

Cynbar and mrl, I appreciate your encouragement.  Thank you.

piozam13

jfkoc,   Thank you for asking.  I feel I am gradually getting better. There were just DH and me and inasmuch as we were no longer socially active, I felt so isolated.  Thanks to social media.  Reaching out and chatting are possible and definitely therapeutic for me.