Almost Said Uncle

Bhopper

My DW has been dealing with losing for 5 years now. Only 61 she has very good muscle memory and anything related to primitive memory is strong most days. When the loop of fear or obsessions over facial features take over Nothing can distract or redirect. She has been on seroquel for the past 9 months and it helps but the past 3 days have been relentless of why wont I take care of her nose or hair ears etc. I have tried to communicate to family the extent of behavior when it comes. I have accepted that the day will come that memory care will be the only option but the decision I put off again as she knows me & others by sight. My fear is if I cant change my heart I will crash before she does. I tell myself to let go of emotion and just let it go when she rails about my not caring how she feels or what she needs. I have lost 40 pounds in 6 months have hired 4 hour per day help for the weekdays. Most recently my hope has been to survive the weekends. We almost moved to assisted living together but after assessment by multiple facilities determining she is memory care appropriate. The last time I thought I could not do it anymore was just after Covid restrictions had eased some. My hope was to make Christmas now I am hoping to get through to her birthday next month. It sounds horrible but if I can hold on until she does not recognize me. Maybe its for me I don't know and only time will tell but for today I am glad to say we can go for the next goal of birthday and hope for Christmas.

Thank You All 

banpaeng

Mr. BHopper, I was having the same conversation with my sister today about my wife.  I to am trying to make Christmas.  Not really sure I will make it, However you are not alone.

David J

Bhopper I hear you.  I keep setting similar goals: make it to the end of the year 2020, make it till Covid is under control in long term care facilities, make it until long term care facilities allow in-person visitation, make it to the end of summer 2021, and then another goal. 

At some point I won’t be able to take care of my own health, not to mention hers. Then it will be time. 

Battlebuddy

   Love this thread. I love it when someone says something you thought you were the only one thinking.

   I had 6 months goals that we are now half way through. My big goal is September. Last week I had to shorten my goal to get to September because I thought I could only make it two weeks. But thanks to some new meds for DH, I’m back to thinking I’m going to try to make it. It’s a big one because I turn 65 and can go off corporate health insurance and on to Medicare. 

   I too would like my husband to not know me if I placed him in Memory care. But what a terrible goal we have to set. When he doesn’t know me then I can do such and such.  

Joe C.

Bhopper, I could have written this post myself. DW has been on seroquil for 13 months but recently her agitation level is increasing. I have been on the schedule of trying to make it through the summer but some days I don’t know how long I can keep going.

Cynbar

I also have been feeling this way ---- maybe there is something in the air? My DH has always sundowned, goes through an agitated state from roughly 5-8 pm where he perseverates on something ("I have to go to a meeting now") or looks for something ("Where is that hat I used to have?"). Lots of repetition, lots of anxiety. Then,it blows over. I've gotten pretty good at dealing with it, I can multitask and do something like work on the computer or cook dinner while replying to the same question a hundred times or using fiblets to redirect him. Zyprexa worked to keep it at a (somewhat) manageable level. That was until a couple weeks ago, when he moved some of these agitated spells to the middle of the night! I've spent 2-3 hours several nights talking him down, telling him the meeting is next week, turning off the lights that he has turned on, answering the same questions over and over. It is absolutely exhausting. His doctors have increased the Zyprexa with no success yet, but absolutely won't prescribe a sleep aid because he is a fall risk. I have hoped to keep him home longer --- he has been so unhappy when he has been in short term rehab --- but this can't go on indefinitely.

littleme

Bhopper and others:

Just a warning. My DH has been in residential care for almost 5 years, is now probably stage 7. But he still knows me, knows my name, and loves me to visit [twice a week for 1 hour each time, all I can bear.] But if I had waited until he didn't know me before placing him, then I am sure I would not have survived this long.

PLEASE don't set unreasonable goals for the length of your caring. You may have no possibility of reaching them, and wear yourself out in the process.

littleme

shardy

Just a thought, Jim has been on seroquel for just over 18 months.

During that time the obsessive behavior, compulsions, paranoia and angry rages have returned multiple times. Each time when they became steady for 3 days we increased the seroquel and magically within less than a week things were once again better for months...

It has been increased 4 times. I don't think I could survive having him here without it.

It's the same here just make it to spring.. Just make it to Christmas....rinse,  repeat...

Crushed

DW  has been in memory care since October of  2017.  By summer  of 2018 she had lost all recognition of me or our children.  These have been the three longest most painful most miserable years of my life.  Next week is our 46th wedding anniversary , whatever that means

David J

Crushed-

What it means is that you and your wife are still walking down the road side by side. You still have each other, even if she is unaware. The road may not be going where you thought it would when you wed 46 years ago, but you are still on it together.  

Shortly after joining this forum, I realized that you and your wife were a few years ahead of my wife and me on this path. It has been a comfort to know you are up ahead, sending messages back to help us on the way. Thank you for that. 

Celebrate the day for what it is: a testament to your love for each other and a milestone on the road, wherever it leads. Happy Anniversary.