She Went to Memory Care Today

DJnAZ

This afternoon my wife and best friend was admitted to a memory care facility. Her journey by all estimates has been short as she was only diagnosed with  dementia slightly over two years ago.

During a week in the hospital that ended today with her transfer to the MC facility, she had another CT that was compared to one she had in March 2021. The hospital neurologist said the progression of her dementia was, in a word, "astounding". Particularly for someone her age, 64.

Since her mother passed in 2006 from Alzheimer's, in the back of my mind I worried that the same fate might await my wife. Two years ago reality set in. I suppose if there is any silver in the lining it is she is progressing so quickly. I hope the fast progression continues ultimately easing her pain and suffering from this insidious disease.

Several months ago I managed to get her qualified and accepted into Arizona's Long Term Care System (ALTCS) which is a Medicade funded and state administered program. This insurance basically covers her total care and well being and the financial implications for me are huge.

I'm lonesome, depressed, angry, sad and a range of emotions I'm experiencing for the first time. She was and still is my best friend. But now I'm on my own for the first time in many years. I plan to talk to a counselor this week to begin to focus my emotions in a constructive direction. I will always do anything I can to make her life as comfortable as possible while also trying to find a meaningful path for my remaining years. Memories will get me through...I hope!

Joydean

Djnaz I’m so sorry.  This is a horrible disease and I hate it! I agree with you that the fast progression is better . Your emotions are very understandable. I do hope the counselor will be helpful. My prayers are with you and your dear wife.

toolbeltexpert

Djnaz I am so sorry, I am praying for you.

Ed1937

DJ, I'm sorry, and I know what it feels like. My wife went in MC on Friday. I hope they can both acclimate quickly.

M1

Good luck DJ.  Hope it goes well.  You're right, there is some mercy in fast progression.

White Crane

DJnAZ, my prayers are with you and your DW.

DJnAZ

Thanks to everyone for your kind words and encouragement. I hoped for several years this day would never come. But it is here and is my new reality.

Joe C.

DJnAZ, I know how difficult this move is and completely understand the range of emotions that you are going through. By all means see a counselor, it has been 8 months since I placed DW and I am still dealing with similar emotions. I wish you the best moving forward.

ButterflyWings

DJinAZ,

Praying that all goes well for you both.

Jeff86

DJ — completely understand the challenging emotions you’re experiencing.  Like you, I am losing my best friend as well as my spouse.  You are doing all the right things, for each of you.   My thoughts are with you through this enormous adjustment.

DJnAZ

Question for those who have traveled this part of Hell's Highway...how long did you wait to visit your loved one at the memory care facility?

On the suggestion from her nurse but against my better judgement, I went Sunday to take some of her personal items and see how she was doing. She saw me, gathered up her things and was ready to go. Staff had to distract her and sneak me out a back door. It took her several hours to calm down.

I think she needs time to adjust and accept. Seeing me doesn't help. But how long?

M1

I don't think there's any one right answer DZ, you'll just have to play it by ear.  It's been eight weeks for us and I still haven't been able to visit--hate to tell you that. For most folks that seems to be on the long side.  At eight weeks, my partner still has all her things packed and ready by the door, won't settle, won't let anyone hang the pictures back on the wall, nothing.  We had one FaceTime call last week--mediated by the activities director, who was able to redirect her, but she takes one look at me and it's all about "I need to be with you, when can I leave."

I am trying again tomorrow, going to see her with some friends who have been able to visit.  but i'm not optimistic it will work, am going in with a bailout strategy ready.  And I am still absolutely sick about it.  Every.Day.  Ready to give up.  

Hope to goodness this doesn't happen to you.

As I write this I realize I am terrified about going tomorrow.  Fear of more failure.

Ed1937

DJ, I have the same problem. Wouldn't it be nice if someone could tell you that after 72 hours everything would be fine? I saw my wife on Friday, when she was admitted, but only for a short visit, maybe 20 minutes or so. Then I knew it was time to leave. I'm going to give her at the very least a week before seeing her again. Probably longer. Our kids go to see her, and I can get an idea how she might respond to seeing me again through their updates. M1 has been walking a brutal path, and it wouldn't surprise me if I follow his steps.

toolbeltexpert

M1 wrote:

I don't think there's any one right answer DZ, you'll just have to play it by ear.  It's been eight weeks for us and I still haven't been able to visit--hate to tell you that. For most folks that seems to be on the long side.  At eight weeks, my partner still has all her things packed and ready by the door, won't settle, won't let anyone hang the pictures back on the wall, nothing.  We had one FaceTime call last week--mediated by the activities director, who was able to redirect her, but she takes one look at me and it's all about "I need to be with you, when can I leave."

I am trying again tomorrow, going to see her with some friends who have been able to visit.  but i'm not optimistic it will work, am going in with a bailout strategy ready.  And I am still absolutely sick about it.  Every.Day.  Ready to give up.  

Hope to goodness this doesn't happen to you.

As I write this I realize I am terrified about going tomorrow.  Fear of more failure.

M1 as I was reading your post I wondered is it possible the the boxes and stuff have become a trigger. I wondered if they could hide them if that would help? I am so sorry that it has gone on so long. Praying things will change for the better.

Old89

If you are looking for a counselor in Arizona who works with grieving AD caregivers, I can highly recommend Michelle Zipser.  

I started counseling weekly  with Michelle virtually in October, 2021 and she has helped me immensely.   I was over come with grief, anger, depression, you name it.  She has been steadfast, supportive, compassionate and knowledgeable.   Not everyone will feel this way, but I needed somebody trustworthy  to confide in, or to witness my grief, listen to me think out loud about how I could improve our lives. She listens with understanding and without being judgmental.   She has been terrific.   

Counseling has been an important element of my coping with the losses this disease has caused my wife and best friend of 47 years and I.

[email protected] 

Stori

i don’t know what to say but my heart goes out to you.

DJnAZ

TO: M1, Ed1937 & Old89

Thanks very, very much for your experiences and insight. I only stayed at the facility long enough to sign a ream of admissions documents, talk with her NP and spend a few minutes with my wife. As I said, when she saw me she gathered her two small bags and would not let anyone touch them. She said, "...let's go! Now!" Over and over.

I know I was the trigger and I'm giving her time to, hopefully, adjust or accept where she is. The facility staff are trying to put together activity plans that may help her not focus so much on wanting to leave. Due to her aphasia I can't talk to her or even text her. At this point I'm relying on the staff to tell me when the time to see her is right.

I really appreciate everyone sharing their experiences!

DJnAZ

A brief update on when is the right time to see a LO in memory care:

I went to the facility yesterday to take a stuffed animal and two posters for my wife. The admissions person said she would get my wife's nurse and perhaps she would know if 9 days was long enough. The nurse was kind and understanding but said for the sake of my wife and the staff, it would be better if she did not see me. She said it will probably take a month or more before I can see her.

Not the news I want but the news I expected.