Placed DW in MC

VandyTor08

I placed DW of 45 years in Memory Care yesterday morning, and am in the period of being strongly discouraged from seeing her.  They have kept me well-informed about her during the past two days, but I am sick with grief that I did not anticipate, and guilt as well, wondering if I should have done this at this point.  As I posted here before, at home she was raging against the front door (being locked in an inaccessible way) and at me; experiencing long delusions about "they" and "them", imagining she had a place to go where everybody else was (not family) where she would live, and alternately demanding and angry, and sobbing - eventually, when seroquel kicked in a little, sullen and still and incommunicative.  This has been five weeks now - but she could still put on a better demeanor when she saw our daughter and our grandchildren, which we did a lot since Christmas because things got so bad (we did not even spend Christmas with them because the children are in school, and my son-in-law has had to work full time throughout Covid crisis).  But DW and I both needed help from our daughter and grandchildren in the last eight days because these delusions had become a full time thing at home.   My children finally convinced me to move her, and the place I felt was best (due to a very impressive director who has worked in this place for 21 years - she's only 38, but started there at 17 as a caregiver, and a night manager with 30 years experience who has been in her job there as night manager for eight years) suddenly indicated to me they could take her on Tuesday.  My children and I decided to do it.  I've had nothing but deep grief and regret since I left her there - feeling much worse than when she was raging at me, telling me she hated me and would never speak to me again, which had become a several time event each day.

She is, evidently, in the 25% who suffer serious delusions as they transition into middle and later stage 6.  They always involve intruders in the house who treat her horribly, always plural intruders, though its just been the two of us.  And most of the time, she things I'm the worst one of them, or the ringleader.  I don't know why she suffers them, and I don't know why a woman who has always had the sweetest disposition throughout an entire life would suddenly rage on a daily basis.  As recently as five months ago, she knew she had Alzheimer's, and throughout these 8 years never tried to hide from the diagnosis, and always had the attitude "it is what it is" - "we make the best of it and live our lives the best we can."  Since she lost awareness of the disease, she's come to think of me as an abusive husband, or captor, I suppose - someone who controls her, an independent and autonomous woman by never allowing her to go outside alone. Every once and a while she would say something that let me know she was still there.  On the first, she said, "I don't understand what's happening to me; I'm just trying to hang on. Don't ever leave me." That day (she always loved football) she came home from our daughter's house and I told her the tv is on Iowa State and Oregon, but I'm not really into it - do you want to watch a movie, or listen to music or something?  No, she said, I like football (and she has always loved football).  I said, well, Iowa State has just scored.  Then she turned to me and said, "didn't your dad graduate from Iowa State?" Less than thirty minutes later she was raging, trying to leave by herself, and telling me she wanted nothing to do with me ever again, insisting she was not my wife.  And that went on until she went to bed four hours later.

I cannot shake the feeling that I put her in MC too early (she is depressed, barely eating - but she's had no noted delusional episodes and has not tried to leave or tried to open doors). My other daughter, who is a noted scholar, social worker, specialist in hospice, who is a professor in a University, offers her opinion that its her innate desire to observe social niceties with strangers - and I'm neither a stranger nor an innocent person (instead most likely her captor), so no need to observe niceties.  I don't know what it is, but it further depresses me.  But at least she's not raging or sobbing in MC.  Just terribly sad, and quiet, and not eating or drinking much.  Meanwhile, I'm sick to my stomach with the realization that she will likely never return to our home - I never thought our 45 years of living together would end this week, and the grief is simply more overwhelming than I could ever have anticipated.  I suppose its compounded by not being able to visit.  I hope to go by Sunday, once my Covid test results come back (must have a negative Covid test every 14 days to visit a resident daily or at all). My test is tomorrow at 1:30 with a 48 hour turn-around. I hope I'll feel better then - but I'm worried she will rage at me for abandoning her to strangers and beg me to bring her home.

I don't know - it's all so overwhelming right now.





  

M1

My heart goes out to you. Don't beat yourself up, I think you did the right thing. You could not realistically have continued as you were. I think your daughter's observation of your being her "safe target" is likely accurate. But I'm sure the grief is terrible and I'm so, so sorry. There are many threads on MC adjustment and be ex prepared that it may take longer than you wish....

Crushed

How do I say "been there done that" in the nicest and most supportive possible way?  My lovely wonderful devoted physician wife has been in memory care for 3 years.  She was psychotic and aggressively wandering.   But she is safe and well cared for.   Therapy helps.

abc123

Vandy, I'm so sorry for all of you but mostly you. I hope you get to see her as planned. I will be thinking of you. Please let us know how she is doing and you too.

HusbandHasEO

Hi Vandy,

Thank you for sharing your post and your feelings.  I am in almost at the same place as you with my DH of 33 years.  I could almost have written your post.  Except that I haven't placed my husband yet in the MC facility.  I am taking steps to do it...and for the same reasons as you have outlined.  My DH is late stage 6 and also exhibits the same kind of behavior directed toward me that you describe.  Also coming from someone who was always kind and easy going.

He is so miserable and anxious all the time, I can only think he would not be any worse off...and maybe happier in MC as you mentioned, there will be many others there, he can wander further and he will behave better for the reasons you described.

Here is hoping you will find some peace.

VandyTor08

Thank you for these responses.  I got my Covid test today, and should be 48-72 hours for results.  MC called me today and said she was having a very good day, so I asked if I could do a "plexiglass" visit or whether they would advise against it.  They approved it, so I just got back home from visiting her with plexiglass between us. You know, I've never been an emotional person - nobody has ever accused me of wearing my emotions on my sleeve.  Ha - been an academic my whole life, and a Dean or Principal for most of the last 25 years of my career at two different institutions.  But the way she started made me quite weepy, and I found it hard to recover.  She said (not quite this fluently, but the jest of it): "I looked for you, and I looked for you, and I couldn't find you here, and you just left me.  And you didn't come back, so you must not want me.  So I decided I was not just going to sit here, so I started talking to people and doing things, and I enjoyed it.  I love you and I want to be with you, but I will stay here for a while.  We can keep talking and maybe work things out." It's like she thinks she is in marriage therapy or something but she kept talking about how wonderful everybody is.  But it's also obvious from other things she said, she feels left behind by family and would say "it is what it is" (which has been a phrase of hers for some time now).  She talked about her brother and his not being here (he's 350 miles away), and I assured her he would come to see her when he could, and so would her children.  I asked if I could come back tomorrow, and she said "yes, we can keep talking."  I told her I'd bring a small carpet for her room soon and a Sirius radio for her to listen to her 60s music.  She said she'd like that (I'm putting in wifi and "Alexa" in her room so I can put cameras in her room and bathroom - the MC director told me that would be fine.  The wifi will allow me to remotely turn on and off her music when I see her in her room alone.  Anyway, though her words were tough for me, she seems to be adjusting far better than I had thought she would.

We adjusted her meds - took her off Seroquel, and put her on Zyprexa Which she is taking once at night, and it dissolves on her tongue, instead of pills three times per day.  We put her on it the first night in MC, and it seems to have really helped her.  She is still wandering the halls, looking out the window, but has not tried to exit at all.  She is, as of today, showing a good mood with other residents, and told me she helped one of them by listening to their talking a lot. 

I feel a bit better tonight, but she also seemed somewhat stoic, talking without emotion, and not keeping eye contact very well - looking off a lot.  And her right hand has a slight tremor, probably from the meds.  But she is not unhappy or angry, which had mostly been the case the last number of weeks.  So, there's that. 

abc123

I'm glad that you are doing better tonight. Also that you got to see her and talk with her. I hope each visit gets better and easier for both of you. Thank you for letting us know about the visit.

M1

That sounds like really good news under the circumstances-I hope it helped you feel encouraged too...

Joe C.

Vandy, I am sorry to read of your struggles but I completely understand your decision. My DW experiences experiences the delusions of people coming to hurt/kill us, fortunately medication has been working for her. I know that MC placement in somewhere in our future and dread the time I have to make that move. I believe you made the right decision, try to go easy on yourself.

billS

Vandy, thank you for posting about your visit with your wife. That must have been very hard but I imagine also encouraging that she seems to be adapting and not so fearful. Best of luck that things continue to go well for you both.

VandyTor08

I visited briefly with her again this morning.  She was in good spirits. In repeated broken sentences about "seeing my peoples" she talked of time to go home. And she also repeatedly said "good people are here; they are wonderful." They told me tonight that she had a really good day, wandering the halls, and talking with residents in the halls.  She ate well tonight too, for the first time.  My Covid test came back negative ten minutes ago, so I am now free to visit her in her room, so tomorrow I will set up the wifi and cameras so I can see her during the day, and also an Alexa so I can remotely play her favorite music occasionally during the day, when she is in her room. A Nurse Practitioner associated with our Alzheimer's specialist visited her this afternoon, and then called me to say she is doing really well on her new meds (Zyprexa), and yet also to reassure me that it was time to make this move, given her symptoms.  She indicated that the social contexts of constant interaction with numbers of people is likely helping her as much as the medicine to control her tendencies toward delusions.  Anyway, today was a pretty good day, though I know tomorrow will be another day of "ready to go home to my peoples"

Ed1937

Vandy, I don't know how I missed this thread. I'm glad things are working out for your wife and you. And I think anytime someone places their LO, there is second guessing yourself. We all know we shouldn't do that, but it's hard not to do it. I hope these recent good days have helped your emotions. You did the right thing.

VandyTor08

Our daughter and I spent four hours yesterday with her.  She was more animated and happier than I've seen her in two or three months. She kept saying she's ready to go home now, and that "I'm better!"  I've explained that this is now part of our home.  That we own this room - it's ours; that's why our furniture is here.  She says, oh, that's good.  I say, Yes, and you get to do some activities and talk to your friends every day, and we come and spend time with you also.  She likes the staff and the people in the MC unit and repeatedly says so.  I spent three hours with her this morning too, and had a real good visit with her (best conversation we've had in months).  Though, she continues to talk about going home consistently.  But she is not unhappy, or demanding about it at all.  I have cams covering her unit now, and have set up ability to turn on her music to her favorite stations remotely when I see her in the room.  I'm working on being able to control her tv remotely as well, but that's less important.  She really doesn't watch tv much anymore.  But I have to say, seeing her the last couple of days, even though repeatedly talking about going home, has helped me to believe I've made the right decision.  There have been no delusions, no major incidents of anger or sadness, and our conversations have been better, and more meaningful between us, than any of our attempts to genuinely communicate over the past couple of months.  I hope she begins to think of the MC facility as home.  I worry that she won't, and that her desire to be home will only grow stronger instead of fade away.  But this is all new to me and I really am not sure where its going, but the last couple of days have been far better than I could have imagined a week ago.

M1

Such good news.  Isn't it interesting how the socialization seems to make such a difference, we forget that when our first instinct is to keep our LO's with us at home.  There's something to the thing about the kindness of strangers.....

ElaineD

Dear Vandy,

I hear so often that PWAD or other forms of dementia so often 'want to go home'.  Even when they currently ARE in their own home.

I wonder if wanting to go 'home' represents the desire to have things the way they were in the past.  Home means a time and place when things were better, when the PWAD was more able, happier.

By way, you are handling this move superbly:

I've explained that this is now part of our home.  That we own this room - it's ours; that's why our furniture is here.  

So clever of you to come up with this.  And how wonderful that your daughter visits you DW with you.  But you DW will probably still 'want to go home'.  And then she will move on to other topics!

I've read the posts here and also some professional literature, and it seems that many PWAD/dementia benefit from living in an environment with many people including staff that attend to them.  The comfort of constant attention is pleasant for them.  Of course, this doesn't apply to everyone, or even all the time for those who are pleased at the beginning.

It is clear that any PWAD/dementia can change as the disease progresses.  But the best policy in life is to enjoy what is good today.

And if things aren't great, I always remember what Winston Churchill said:

If you're going through hell, keep going.

Winston Churchill

Thank you for your sharing, Vandy, I read every word, sometimes twice!

ElaineD

billS

ElaineD wrote:

Dear Vandy,

I hear so often that PWAD or other forms of dementia so often 'want to go home'.  Even when they currently ARE in their own home.

I wonder if wanting to go 'home' represents the desire to have things the way they were in the past.  Home means a time and place when things were better, when the PWAD was more able, happier.....

ElaineD

Elaine I suspect you are right about "home" representing more of a feeling than a physical place.

VandyTor08

Elaine, Thanks for your comments about "home." I've been off the message board for a little over a week and I have missed reading the various posts because all the posts on the board are relevant to me these days.  I've been visiting DW three to four hours per day, and eating lunch with her everyday.  These have actually, rather surprisingly, been the best times I have had with her since early August.  She's had only minor delusions since entering MC, and she has known me every day when I've visited her (contrary to most of our last seven to eight weeks together when she rarely knew me).  Today, she said when she saw me, with a smile on her face, "Well, look who has finally made it back home!" And that was after she was up all night - didn't sleep a wink last night, as she wandered her room, the halls, and the common areas, occasionally sitting in a recliner, and talking to the night manager and another resident, looking out the window - all without anger, frustration, or sadness.  And she was in a good mood all day today, without the sleep, though certainly a bit tired during our three hours together.  She told me when I asked that she had a great night's sleep last night.  She did not remember being awake all night.  The other day, we talked about "home" - after several attempts with her defining what she meant by the term, she finally looked at me and said, "home is where you and me are." Rarely, is she able to complete a sentence these days, but that one really hit me. With the exception of last night, she has done so well in MC.  She is rarely unhappy now, and the staff have not seen her angry at all since her admission more than two weeks ago now.  Most of the staff have been great with her, and she has taken a liking to most of them.  I think if our nearby MC Center that hosted all day "daycare" had been available for at least the last six months, her placement in MC at this point might have been avoidable because daycare might have allowed for the socialization she is getting now.  But the daycare has been closed since May, and is to be that way now until late summer or fall of this year.  But I must say, witnessing the change for the good for her in her demeanor (not necessarily her abilities or faculties, which have actually continued to decline some) these past few weeks have seemed to confirm that this was the right time for full time MC. 

As I said in the beginning, this was the hardest thing I've ever had to do, and as I also indicated, I'm still lamenting the lack of her presence here at home, and not sure I can imagine it being permanent, but I'm feeling far better about the decision than I was a little more than two weeks ago.

aod326

Hi Vandy. I imagine your wife's lovely comment about home being where you both are, must have been wonderful to hear, and heartbreaking at the same time. DH has been in MC since August, but has had a couple of hospital stays during that time. He hadn't made sense for some time, and at the last hospital stay, really seemed close to dying. So it was really special when he said, clearly, and out of the blue: "We met - isn't that something." (We met in our 40s, from different countries, so it was quite a surprise.) He is no longer verbal, so that's possibly the last understandable thing I'll hear him say.

Everything about dementia is awful and sad - we need to take the positives wherever we can.

Jeff86

It’s great to hear that you have more confidence in the decision to place your DW.  Sounds like she’s made a great adjustment.

Lovely comment about home.  I hate when my DW tells me she wants to go ‘home’ but I’d learn to love it if that’s what she meant!

White Crane

Vandy, my heart breaks for you.  With things the way they were, you did what was best for both you and for her.  I am so sorry.  My prayers are with you.

Ernie123

Vandy I am so sorry you are living through this. I am one year ahead of you as my DW of 53 years had to be placed in memory care 13 months ago when her delusions, anxiety and anger escalated and became more than I could handle. She didn’t recognize me and would scream at me to leave, hit me and throw things at me. Then an hour later she would not recall anything and ask me why I looked upset. My children, her doctor and my Alzheimer’s counselor all told me the time had come. I, like you , felt totally devastated after the move. Grief, guilt, anxiety, fear, you name it I lived it. Fortunately a new memory care facility was just opening nearby and it has proved to be a marvelous place. A year later we are both doing so much better. I visit daily and help her with her shower and clothes which she cannot do on her own. Her medications have been fine tuned and she is content, happy and no longer paranoid or delusional. One important consideration: at the time of the move the Alzheimer’s counselor predicted she would improve just from living in a group social setting. The constant social interaction and activities in the unit are very beneficial for dementia patients. He was right. She loves being with the group, feels safe and secure. There are just 14 residents, mostly women at about her level of progression. His point was to make the move when the patient can adjust to life in a new environment and learn to feel safe there. Waiting until the very final stages to move can be very disorienting and upsetting to the patient who cannot grasp what is happening. 

You must step back for your role of full time caregiver and accept that the staff at the facility are now your partners in care. You are also grieving a second loss. The first is the loss of your wife to the disease and now the second loss of her from your home. Time will slowly bring adjustment and acceptance. I hope sharing my experience is a small help to you. 

VandyTor08

Thanks so much for these recent comments.  I appreciate the prayers, and expressions of concern.  Aod326 - what a poignant comment to be the last intelligible thing you hear DH say - a gift, I'd say, in the tough journey we all are making.

Ernie, thanks for the detail - yes, I find it most helpful.  I am, like all of us I suppose, coming to accept the fact that Alzheimer's is a series of losses, occurring over a matter of years, some of them feeling more final than others.  Thanks for the glimpse of hope in what feels like a rather gloomy future at the moment.

billS

VandyTor and Ernie, I'm curious how you went about convincing your spouse to be placed in MC. Did you catch them at a time they were not angry at you and they just agreed? Stage some type of intervention and take them away by force? Trick them into thinking you were just going for a visit somewhere? I imagine any pointers you can share would be helpful to others who see this step in their future. Thank you.

Pollyanna_4good

new to the forum and absolutely lost.  Mom with dementia and very violent-has stabbed people with scissors, beat my father with Parkinson’s with a brass headed cane leaving him

In the Hospital and still her caregiver will not provider orders for memory care.  I feel this is so irresponsible-but she says it is up to my mother and won’t communicate with us.  I don’t know where to turn but fearful she will really hurt someone badly and end up institutionalized.  Has anyone gone through this with their parents physician?

Ed1937

Pollyanna, welcome to the forum. I hope you don't mind, but I just copied your post to start a new topic for you. You will get many more replies on a new thread because this one has been going on for a while, and several people will not see your post here.

VandyTor08

BillS - this is a good question:  in my case, on Monday early afternoon DW had started another intense delusion.  After driving around for an hour and a half, I couldn't get her out of it, so I texted our daughter that I was bringing Mom over - sometimes seeing Grandkids shook her out of a delusion, and sometimes just my leaving and giving her a new context helped reduce the intensity of the delusion as well. She calmed a good bit when we reached our daughter's house.  I left her there and contacted a MC facility our daughter and I had decided to use if, or when, we decided we needed to do something.  The facility said that could take her the next day (had one empty private room) if we felt it was time.  I consulted our three children by text and all said, given the past eight weeks of intense delusions and behavior, it was probably a few weeks past time.  So our local daughter and I decided DW would spend the night at her house and we would take her in the next day.  I spent the later afternoon, and evening, getting everything together, got to the MC facility by 8:00, and made three trips in a suburban carrying furniture, bed, and clothes, pictures, and other essentials to her room.  I worked until 1:00 am there, and made the room as cozy and as familiar as I could make it for her.  The next morning my daughter and DW met me in a shopping center parking lot a mile from the MC facility. 

I met DW at my daughter's car, opened the door, and she said, "you finally taking me home?" I said let's get in the car and talk about it.  Our daughter got in the back seat of my car and DW in the front seat.  I held her hand, and said, "you've not been happy at home for a couple of months.  You have wanted to go where 'everybody else is' - and have wanted to leave home every day because you've been so unhappy.  We want you to be happy again.  So, we are going to try something new for a little while to see how you like it. We are taking you where you've wanted to go, where 'everybody else is'.  There will be activities and people to talk to, and we will be there as much as we can also. I told her since she has said repeatedly over the past couple of months that she wanted to be independent and have her own space, we are going to a place where she will have some space to be independent. She said, "okay . . . if I don't like it?" I said, we will figure that out together, but I think you might like being with other people and being able to have your independence.

I never mentioned MC, or "facility" or "assisted living" or any of that.  We then drove to the MC.  The director met us at the front door.  I introduced DW to her, and asked if we could show DW her room.  She said yes,  We went to her room with the director.  She went in, said "that's my chair" and sat down.  I said, yes, and these are our pictures, and this is our bed, and our furniture, and these are your clothes.  The director asked if she was hungry and said lunch was ready.  We walked out, sat her at a table with two other residents, who greeted her, and they brought her food.  She only picked at her food and was not terribly responsive to the residents.  I kissed her, said I loved her. She said, "Yeah, sure you do," rather sarcastically.  I said we have to go now, but we'll be back.  She did not say anything.  The director and I talked about an hour later.  She ate a little more after we left, but was generally anxious, guarded, and maybe a little paranoid for most of that afternoon and evening.  The next day, her behavior began to change a bit, and the rest of the story is pretty well related in my other posts above.

One other thing - once I was able to visit her, I began to describe her room as "our home" in all our conversations whenever she asked me to take her home.  I also asked her to describe what she meant by home, which eventually, is when she said "where you are."  I said, "I am here."  Now, whenever she sees me, its "oh, look who finally came home" or "I'm so glad you are home."

M1

Thank you for that, Vandy, it's actually very helpful and heartwarming to read. It sounds like you handled it beautifully. I appreciate knowing. I am shedding a tear for you and your DW tonight....

Ernie123

BillS: When it was time for the move I followed the advice of Alzheimer’s Society counselor who said not to discuss it in advance as it would only create upset and my wife was no longer able to understand cognitively the need for a move. The counselor said to just do it and deal with the fallout after. He also said to rely on the professional skills of the care staff who do this on a regular basis. On move day my DW was taken to her sister’s home. My daughter and son assisted with moving personal effects and furniture to her new room, putting up pictures etc. Early evening my children and I picked up my wife and just drove to the new facility and said let’s go in here and see the new place. Once inside we went into the room and I said let’s stay here for a while so you aren’t all alone in the country at our farm. I still maintain the fiction that I will be moving in soon too, I am just looking after the farm for a while. That first evening she was confused, but not alarmed. The staff distracted her and told us to quickly disappear. We left. I was an emotional basket case. The next day we phoned and learned she had slept well, was confused but not upset. The staff there are angels. As my wife has no short term memory she could not recall what had happened, she just lives in the moment. We had been told to stay away until she settled. On the fourth day, the staff called and said she was probably ok for a visit. I was still a bit of an emotional wreck. My son had insisted I visit my doctor. For the first time in my life I needed medication to cope. I was prescribed Lorazepam to take as needed. Those first few days I took one or two tabs especially when we were going to visit. Otherwise I would have been crying like a little boy. Looking back, the move was harder for me than her. At first she would ask to go home. But sometimes she meant her childhood home with her parents.  But most days she was ok. She lives in the moment and the moments there are filled with music, kind happy staff, activities all designed for dementia patients. Even today she has no idea if she has been there a week or a year, but she has grown accustomed to feeling safe and secure there and we now enjoy daily visits. The psychotic episodes that precipitated the move no longer happen. It has taken me a year to begin to adjust to living alone and while I am doing ok I still have my moments of grief and loneliness which I know are to be expected. With time we can adapt to whatever life gives us.

billS

Vandy and Ernie, wow, thank you both for sharing what must have been incredibly difficult events of moving your DWs into memory care. After suffering through the behaviors this cruel disease inflicts, it must seem equally cruel that the worst behaviors have stopped but only because you are not together with them in your homes. What a cruel choice: try to keep them home at the cost of suffering impossible behaviors, or place them elsewhere to tamp down the behaviors.

abc123

Vandy, I can't thank you enough for sharing all of this with us. You have no idea how many people you have helped and will continue to help in the future. I am grateful and thankful to have this thread to share with my 84 year old Dad. If he doesn't do something soon, I'm afraid I will lose him also. This thread is proof that we must always put our loved one first, no matter how hard it is to do. 

Vandy, Ernie, Bill, you are in my prayers. 

Glopark

I made the decision to place DH in MC today and am already having horrible feelings of guilt. As another told me, “If you DW had her faculties, she would never forgive herself should she do something which harmed you.”  I wish both of you to have peace!