Constant Crying, Fear, Feeling Forlorn and Hopelessness

Comrade

Good Morning,

Over 2.5 years in to Sue's daily struggle, she and I have reached a daily impasse that feels endless and hopeless for both of us. She is inconsolable, not recognizing familiar objects or their functions.

She is unable to empathize or understand when help is being given. In other words, she seems to feel that things are being done "to her" and not for her.

This is 24/7 and is reaching a serious moment for both of us.

Her psychiatrist took her off the Seroquel that he prescribed after shaking, mobility issues and confusion became an issue. She seems now, unable to calm down and have a continuous  thought. She also takes Trazedone to help her sleep and a anti-depressant.

Her primary care physical has not determined anything physically wrong.

Request for Comments

When redirection fails, when assuring and holding is rejected, what can be done next?

FTDCaregiver

Hi Comrade - Both Seroquel and Trazadone have helped my DW in arresting her anxiety (horrible prior to this but manageable now).  She still has bouts of anxiety in the afternoon, like you, redirection techniques have helped but given her condition is dynamic (always changing), I've found it a very much trial-and-error and live-and-learn situation.  What works one day may not work the next. For me if one thing gets rejected, I retreat and try another. I use music, dance, don't confront, use low tones, counter her anger/fear with a big smile and a happy tone.  when she draws a line in the sand I side-step it, but never cross it.  For example, the other day on the way to bed, she pulled back from me, wide-eyed and said aloud "is something wrong"?  I paused...seen this before and knew I had to be careful on how I reacted, side-stepped it and said in a low tone with a big smile.."you're so sweeeeeet"!, didn't touch her, didn't move toward her.  She looked at me with a little smile and on we went to bed.  Whew...worked this time...Don't be afraid to try new things, for us what works one day, may not work the next for for us some common approaches still work such as don't correct, don't confront, side-step confrontation, back-away when necessary, use affirmation statements like "good girl" all the time, and ooh god...alot of patience.  We're all learning as we go, I was terrible at first, angry all the time, confused, but like to believe my DW has taught me to be a better student through all of this. Hang in there, you're doing a great job and know you're not alone!

Comrade

Good morning and thank you for your thoughtful reply. I try to use a smile and am very cautious about my facial expressions. However, when woken and startled, not everyone gets the bed side of me. 

Last night, DW figured out how to open the baby gate and walked up a flight of stairs. She then managed to find her way in the dark, but fell. It frightened her and me! Needless to say, I was startled and disappointed that the gate didn't protect her. I also discovered that she had been wandering and tried to open the front door. 

How can a person who can no longer identify a fork, plate or other; figure this out? 

I have to sleep and am now exhausted and irritable. DW understood her actions put her in danger "at the moment", but will have forgotten the entire episode this morning.

I am at wits end believing that the rest of her life and my own is navigating a downhill course. Memory care or a facility is out of the question, since DWs diagnosis was unexpected and I had to retire early to help.

Crushed

Comrade wrote:

Memory care or a facility is out of the question, since DWs diagnosis was unexpected and I had to retire early to help.

You need to see a Medicaid lawyer YESTERDAY

What happens if YOU get sick?

https://www.seniorplanning.org/long-term-care-medicaid-eligibility/kentucky/

Comrade

Thank you for your advice and already have. Plus, my best friend is my wife's doctor and have resources available.

Lorita

Hi Comrade,

 My sister had alzheimers and when we had to place her in memory care she was very combative and almost unable to be controlled.  She wouldn't take medication to help her so they rubbed Ativan cream on her forearms which helped tremendously.  I think they did this at least a couple of times a day.  You might ask about this.  It really helped her to calm down and get to the point she would take medication.

 There are little contact alarms you can put on doors and probably on the baby gate, too.  One part of it fits on one side and the other on the door facing.  When contact is broken, it makes a very loud noise.  I put one of those on the bathroom door that leads into the LR- Charles opened it two times and immediately closed it.  I got these at the Dollar Tree, I think - very inexpensive and really worked for us.  Everything in caregiving for someone with dementia is trial and error - and sometimes frustration.  Good luck.

Comrade

OH YES! Thank you for the Ativan suggestion and have spoken to DWs psychiatrist. Since he is treating us for free (friend), we will have to take my wife to his office and register her.

I am anxious in a good way, to start something new to better help calm her down.

Thank you!!!

Gig Harbor

You can buy a mat that you put at the bedside and it will set off an alarm when she stands up on it as she gets out of bed. Is marijuana legal in your state? Some have had good luck with that. I am not there yet with my husband but I feel I should be taking notes.

Comrade

Good Morning Gig,

One would think that almost 3 years in to this, I would have learned something! Indeed I have, but each day feels like a new challenge.

Thank you for the suggestion and have had others tell me about the mat, but am still not there with sounds. DW is highly sensitive to any sounds that frighten her, and reacts negatively.

I wish I could explore alternative therapies. DW is a recovering alcoholic (sober almost 30 years). It is possibly more my hang up, but think you have an idea. I will mention marijuana to her doc. It is not legal in Kentucky, but I really am NOT concerned. Nothing should stand in the way of help.

Thank you.