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Facing placement
Crushed
Posted: Monday, October 9, 2017 2:23 PM
Joined: 2/2/2014
Posts: 6735


We are down to the last two weeks before placement.  My heart says "how can you do this?" my head says "how can you keep putting this off

Everyone says it's time.  Physician, Therapist, Support group, Daughters, siblings.  I have become the nice man who makes her dinner and keeps her clean. She stands or sits staring aimlessly.  She was my wife, my partner my friend and I have to let her go.  They will take care of her, better than I can.  If I want to cook for her I can bring her meals just like I did when she was a medical student 42 years ago.  I can put photos of her on the wall to try to help her remember what a wonderful life we had.  I can show what great work she did and what fine children we have  But I can't have her back, she is gone. 


Laurention
Posted: Monday, October 9, 2017 3:14 PM
Joined: 11/4/2014
Posts: 407


 Everyone tells you "its time"..Yeah, that kind'a  mirrors my experience. 

Yes sir, it certainly won't be easy..Just put one foot in front of the other.

Today is Thanksgiving here in Canada. The facility put on a lovely dinner. She has no recollection. They have to assign a PSW to feed her...Conversation has pretty well gone..Lately she has been very unsteady on her feet.. She knows who I am, but never says my name. 

Placing my wife was a horrible experience..I knew I had gone as far as I could go, I had exhausted all options..Eight months in and I'm finally coming to grips with it all.

With all due respect sir, I believe you have reached the same place..The professionals, your kids, siblings. etc have all expressed their thoughts.  Let me add mine.

Its time.

I know its not your thing, but may God be with you.

Best of Luck, and stay strong

 Mike 


elainechem
Posted: Monday, October 9, 2017 3:23 PM
Joined: 7/30/2013
Posts: 6037


I am so sorry. This is a decision almost all of us will face at some point. I know how hard you have worked for her. Now you will work for her from another location. I will pray that she has an easy transition.
The Hamp
Posted: Monday, October 9, 2017 3:38 PM
Joined: 2/20/2017
Posts: 36


DH and I are fast approaching decision time, too. We're trying to get his meds adjusted to he sleeps during the night (I need sleep, too) and doesn't become angry and combative. We've had some close calls in that department, and he threatens me often (sometimes following through, but not most times).

Friends and family have been giving me "the look" for a while (he has no remaining couth and behaves so inappropriately). But he's mobile and still able to have fun sometimes (though, of course, he doesn't remember it). Call me crazy, I am going to try one more trip with him. He won't remember it at all, but I will.

I guess for me the decision will have to be made if the violence escalates. I can't knowingly place myself in harm's way in order to protect him from placement, or I could end up there first. He's in Stage 6, so I hope he will move past this aggressive behavior so I can continue to care for him at home. Assuming this behavior is temporary, of course...anyone have any insight on that?


Bjjca
Posted: Monday, October 9, 2017 4:03 PM
Joined: 4/29/2013
Posts: 1259


Crushed, you have been an extraordinary caregiver, and deserve a medal.  I too struggled with placement even though physicians, children, mother, and social workers told me I could no longer care for dh alone.  My husband didn’t know me other than a person who looked after him.  I was shocked at how well he adjusted to Memory Care, how much he enjoyed the activities, how much he enjoyed the attention.  I was surprised by the free time I had, and I started doing things I loved and had put off for a long time.  I guess it was a “win win” for both of us.
JILLBEANE
Posted: Monday, October 9, 2017 5:29 PM
Joined: 8/14/2014
Posts: 483


Dear Crushed, your post brought tears running down my face, I can feel the love through your post for your wife, I am so sorry that it is time. I had to place my husband this past May, and it was the hardest thing that I ever had to do. We have been together over 50 years. Please have someone go with you that day, it is going to be difficult. Let us know how you are doing.

Jillbeane


mike9569
Posted: Monday, October 9, 2017 5:31 PM
Joined: 2/4/2014
Posts: 602


It's not typical to bring spouses home for week-ends or holidays once you've placed them but I've seen it done with no dire effects and since you've turned the manse into a high tone ADA home you might be able to have some one-on-one time.  It's something to consider, if appropriate.  Oh, and I know how hard it is to pull the trigger on placement.
Sailor210
Posted: Monday, October 9, 2017 5:50 PM
Joined: 3/18/2016
Posts: 205


Dear Crushed,

Please recall your words re: putting on your own oxygen mask first.  Placing your DW in MC is doing just that.   Once you get through the first month or two, you will see the wisdom of what you are about to do.  Right now, you must simply take one step at a time and do what has to be done.  I wish you peace and comfort as you do what is best for both of you.

I placed DH 11 months ago in MC.  Today he welcomed me as his girlfriend.  We had lunch, went for a walk, I helped him shower, and then we watched baseball until he fell asleep.  


Caring4two
Posted: Monday, October 9, 2017 6:13 PM
Joined: 7/6/2014
Posts: 668


Crushed wrote: 

They will take care of her, better than I can.

My dear crushed, I think you and I have been on this journey about the same time with our loved ones. I think I officially joined the board back in 2014 also. My husband was a federal govt employee for 35 years, GS 16. Thought we had it made until Alzheimer's came into our life. 

As a newbie, I always looked for posts from you, Jo C, and Zolly (remember him RIP). You guys were my "go-to group". 

I remember following your remodel of your older home to accommodate your wife and possible live in caregivers. You thought of every detail it seemed. So just out of curiosity what changed your mind from in home help to placement?

This spring I had toured MC facilities thinking by Christmas I might have to place my husband as he was becoming a 2 person lift and needed 24/7 supervision and was declining rapidly. I guess he had another idea. In June he up and died from a massive brain bleed. Now none of that  matters (except to pass my knowledge on to someone else). 

I was looking at placement instead of in home help because at the end of the day, I found I needed a place to escape. I couldn't relax with people constantly coming and going from our home. Just wondering if that's what you are feeling. I am a retired nurse so the hands on care was not the problem. It was preserving myself that was becoming a problem. Finding respite for me. 

I've always thought I lost my "husband" the day we got the diagnosis in 2013. From that point on my job was to take care of a very sick man. I guess I was his private duty nurse and he was my patient. He trusted me. The HARDEST decision I had to make was to let him go after the stroke and not pursue any heroics. I am now a 65 year old widow trying to find my way.

I hope you will continue to post and teach us and award medals. I can't imagine the boards without you. I have learned so much from you. Never doubt your worth to your wife and to all of us "board members". We cry with you.


littleme
Posted: Monday, October 9, 2017 7:12 PM
Joined: 5/4/2013
Posts: 1323


Crushed

I too placed my husband 12 months ago because everyone told me it was time, though if my health had been better, we might have lasted longer. But I still find myself as his constant assistant and advocate when I visit regularly. He knows I am his wife, but has no real idea what that means.

The first few weeks will be so hard, but as you rest and get your own strength back, you will become a better advocate for your own dear wife, and a help to everyone else on this board.

We are all pulling for you.

Barbara


Keep Calm & Carry On
Posted: Monday, October 9, 2017 8:35 PM
Joined: 4/2/2013
Posts: 1565


I am so sorry, Crushed. Having been through this over the past six weeks, I simply can send you and your DW many, many hugs.

But you are doing the right thing. Never, ever forget that.

With many good thoughts,

Marjie


Sandymac
Posted: Monday, October 9, 2017 8:54 PM
Joined: 10/31/2013
Posts: 1783


Crushed...you have been a rock on this forum for so long.   We have followed your journey, and grieve with you as you make this step.   Only those of us who had to make this same decision know how you are feeling.   Hugs to you and your daughters.
Ricki07
Posted: Monday, October 9, 2017 9:35 PM
Joined: 2/4/2017
Posts: 528


Crushed... .  You  have helped so many people with your advise, suggestions, legal help, etc. Other than thanking you, I wish I could offer something helpful, but others have that covered.

It won't be easy.....just know that I ( and so many others) are thinking of you during this especially difficult time.

Ricki


Bjblyghtnin
Posted: Monday, October 9, 2017 9:39 PM
Joined: 7/9/2013
Posts: 3205


I too am sorry you are at this point.  I was told for a couple of years by everyone to place Bill.  It was hard, but I knew it was time.  He was falling way too much, and his aggression was getting worse.

You have done your best, she would be proud of you.  Take care, and yes you also are a hero and deserve medals.  I just don't know how to put them on here.

Bonnie


Crushed
Posted: Monday, October 9, 2017 10:11 PM
Joined: 2/2/2014
Posts: 6735


Caring4two wrote:

Crushed wrote: 

They will take care of her, better than I can.


I remember following your remodel of your older home to accommodate your wife and possible live in caregivers. You thought of every detail it seemed. So just out of curiosity what changed your mind from in home help to placement?


Two issues were decisive. She was actively continuously trying to escape the house.  And she had severe Mirror self misidentification syndrome.  She reacted to her reflected image with a variety of screaming and paranoid responses. These two issues are simply beyond the ability of ordinary caretakers to manage alone.

  https://en.wikipedia.org/wiki/Mirrored-self_misidentification


YS
Posted: Monday, October 9, 2017 10:26 PM
Joined: 12/10/2011
Posts: 428


  Crushed, they don't call this disease the long goodbye for nothing. From the time of diagnosis, even before, and for every decline, we say goodbye again and again. Placing your wife will be yet another goodbye, this time even more painful because of the physical separation.

You will come through this too, not unchanged, but you will. And your wife will be well cared for. In the end, you will have done your best for both of you. 

But now, I will ask you a very selfish thing. I will ask you to continue coming to this board and providing your knowledge and wisdom. You can see, yourself, by all these posts that you have been a great help to many. 

Good luck, my friend. 


Blondie49
Posted: Monday, October 9, 2017 10:30 PM
Joined: 2/8/2017
Posts: 447


Crushed,

I am so sorry you & your wife have to endure this.  I follow your posts all the time and you always are here to give encouragement & advice & much needed empathy.

Please know that you are not alone on this journey.  We all have to make this decision: what is best for our LO.  It is up to us to make sure they have the best care and sometimes it is not us, that can provide the best care. 

I think I read this on one of the posts:  when it comes to placement, we can't let our emotions rule us.  We have to make that decision knowing that this is best for our LO. But we are not superhumans,  we do get emotional.  This is our life,  all these years and we can't just set it aside.

You've done a good job.

Blondie

 


Jo C.
Posted: Tuesday, October 10, 2017 11:37 AM
Joined: 12/9/2011
Posts: 11999


Dear Crushed, it is difficult to find words sufficient to say how very sorry I am for what you are experiencing.   This is a huge decision and one I am sure you do not make easily.  Personally, I found it to be one of the most difficult decisions I ever had to make.

This was the point at which I really realized that logic and emotion do not live on the same plane of existance.  Common sense and logic told me one thing; emotion told me quite another.   It certainly kept me second-guessing myself, especially in the dark, wee hours of the night.

Your decision and the reasons for making that decision are sound.   What I found after those first difficult days after placement, was that the decision for placement was actually a good one for my LO.  Still, it was no less heartfelt.

My LO had routine and structure every day.   My LO was no longer bothered by the home environment and the feelings therein.  I had not realized that the home environment, though carefully set up and orderly, was contributing to unsettled feelings which resulted in behaviors.  There was even somewhat an increased socialization at the care facility, in a rather skewed way, to the level that could be assimilated or experienced; sometimes, it was just watching an activity or music events.   There were halls that could be walked to whatever diistance and duration that was being felt.

My LO was safe, secure and cared for.   Of course, we are still Caregivers.   We are the advocates and oversee all and sundry.  BUT . . . we are able to return home and rest, recoup, sleep through the night and so much more that could not be done before;  however, it takes time to recoup and adjust to the new way of being.

There were those early days when I left the facility and found myself in in tears while I drove home.  To be expected; it was the concrete evidence that not only everything in our life had truly irrevocably changed forever and ever in that we were no longer together, but it was also evidence that we were far closer to the end of the journey than I had absorbed while at home.

You are you; you are a very caring person, you are a highly capable person, you will always be the advocate and loving presence.   I just wish there were somehow a way to make this easier for you..  I am glad that you have such dear daughters who will in all likelihood be a supportive presence for you.

I wonder if you have yet made the choice for care facility and hope it is near you for convenience and oversight's sake.

Please let us know how you are, I will be thinking of you as I am sure we all are, and am sending warmest of thoughts your way.

J.

 


Sayra
Posted: Tuesday, October 10, 2017 1:04 PM
Joined: 8/10/2016
Posts: 3195


(((Crushed))) I am so sorry.  When you feel like it please come by and visit.

Sara


Keep It 100
Posted: Tuesday, October 10, 2017 1:33 PM
Joined: 2/26/2017
Posts: 583


I am very sorry to read this. I know you worked very hard to keep her home, but this is further proof that this wretched disease will twist and turn in unimaginable ways. We can plan away...but must always be prepared to go in another direction if that is the need. 

You have a lot of love and support surrounding you and that will be a big help. 

Best wishes as you journey forward, May


Caring4two
Posted: Tuesday, October 10, 2017 2:00 PM
Joined: 7/6/2014
Posts: 668


Keep it 100 wrote:

 this is further proof that this wretched disease will twist and turn in unimaginable ways. We can plan away...but must always be prepared to go in another direction if that is the need. 

True, true, true and so hard to live by this concept. Probably one of the biggest hurdles I had to get over in the early stages when planning was possible. About stage five/six you learn to live by the moment and be extremely flexible, or you won't survive!


BFG
Posted: Tuesday, October 10, 2017 3:52 PM
Joined: 5/30/2015
Posts: 243


  It has been over a year since DH was placed.  I felt so guilty then and still do.  He is a 2 person lift, unable to walk, totally incontenient, angry and blames me for putting him in jail----and I  feel guilty.

But I know they take better care of him than I could at home.  I have had to give up on him wearing matching pj's---but they are clean.  Eating food that he doesn't like or is old--but

hes not losing weight and his blood sugar is controlled.

I hate all of this and I know yall do too.  


jfkoc
Posted: Tuesday, October 10, 2017 6:28 PM
Joined: 12/4/2011
Posts: 20125


From the front of my refrigerator...it helped me a lot.

Realising that all the choices we make are half chance and accepting the outcome, whatever that may be - in the knowledge that we can always make a different choice later, provides us all with an amazing springboard to move forward with our lives.

Even our "best" choices are half chance and often not our first choice.


surfergirl
Posted: Tuesday, October 10, 2017 7:05 PM
Joined: 1/23/2012
Posts: 781


Crushed,
Every one has said everything I felt already, all I can ad , am thinking about two .

 

Surfergirl
LKAC
Posted: Tuesday, October 10, 2017 8:50 PM
Joined: 3/22/2017
Posts: 312


Crushed I am afraid that I too am going to be selfish and ask something of you during this difficult time. I value your opinion,  I would like to know the process you used in looking at different facilities and what factors lead you to the final decision.  The reason that I ask is that while I do not have imminent plans to place my dh, I am a planner and want to be ready with options if or when that day comes. I have looked at about 7 places already and plan to look at 2 more. A couple of which I  was able to  cross off from consideration.  The rest all had pros and cons, no clear winner. What was the decision maker for you? Hopes that this transition goes as peacefully for you and your DW as possible.
Joy16
Posted: Tuesday, October 10, 2017 9:32 PM
Joined: 9/17/2014
Posts: 92


Crushed,

I couldn't believe your words! I just logged onto this site to ask for insight into how to prepare for the transition from home to MC and there was your post!  MC called yesterday and said there is an expected opening for my husband in the next 2-3 weeks.  I don't think I have cried so hard since we got the formal diagnosis in 2014.  This has been the hardest decision of my life.  I too am feeling that sense of loss and the pain that takes ones breath away.  You and your wife will be in my thoughts as we take these next steps together.  


kellly
Posted: Wednesday, October 11, 2017 8:38 AM
Joined: 6/12/2015
Posts: 1131


Every single person's thoughts and feelings here are my own. In the impossible situation with painful choices the only ones that can be made, I found that when the hospital placed my ex-husband directly into memory care, I thought it would unravel me completely. It's been only a few weeks but I'm gaining respect for that decision every day. He's now eating properly, he's properly dressed and hydrated. Of course he hates it there, hates all the staff and other residents, hates the food, and only wants to come back home. But all I have to do is look at him and see that he's better off. He went from sleeping 20 hours a day every day, often forgetting to eat or drink, to now finding fault with pretty much everything in his experience. So much like the way he used to be. And yes, now I can sleep through the night and give some thought to want I would like to do the next day.
Crushed
Posted: Wednesday, October 11, 2017 11:26 AM
Joined: 2/2/2014
Posts: 6735


I am using in home care to get DW used to other people feeding and taking care of her.

I appreciate all the kind words.  My whole career I dealt with the sudden violent death of innocent people.   I am truly humbled by this disease and long pain it inflicts. Like everyone here I get by with a little help from my friends 

 


sadsandra
Posted: Wednesday, October 11, 2017 11:42 AM
Joined: 12/31/2013
Posts: 1347


HI crushed, I haven't been on for awhile. I have to say of so many caregivers I have had the privilege of meeting on this board. You dear crushed I have admired, been in awe of the way you have loved and cared for your bride. You have done more than care for her. Let someone else take over the hard stuff. You love her still, don't let this take you down. It is best for you both ❤. I'm so sorry you have reached this stage.

Peace, love, prayers and lots of big hugs ✌❤


BFG
Posted: Wednesday, October 11, 2017 3:01 PM
Joined: 5/30/2015
Posts: 243


Free advice is always worth what you pay for it.  I had my DH in a skilled nursing unit 36 miles away and moved him to one 1/2 mile away.  The one 36 miles away was probable a little nicer, but being closer to him makes all the difference in the world.  Just for you to put in your plans and notes and do what you feel is right for you.


Crushed
Posted: Wednesday, October 11, 2017 4:55 PM
Joined: 2/2/2014
Posts: 6735


BFG wrote:

Free advice is always worth what you pay for it.

 I've worked with volunteer lawyers who saved innocent people on death row and volunteer doctors whose telephone advice in a disaster was priceless.  I've worked with volunteer engineers who risked their lives on how to stabilize a building so they could evacuate people.   that is one of the most awful things you can write .  I treasure the advice I get here. And as a volunteer attorney  I give advice with the same care I would give a paying client 

 

 



jfkoc
Posted: Wednesday, October 11, 2017 8:11 PM
Joined: 12/4/2011
Posts: 20125


crushed...how is your wife doing with the extra help?
dayn2nite2
Posted: Wednesday, October 11, 2017 11:41 PM
Joined: 6/20/2016
Posts: 2784


I've said it before - the day of placement will literally be the worst day in your life, worse than when she leaves this earth.  Believe that.  It will feel physically painful, but know that on the other side, when she gets settled some, you will see how beneficial it is for her AND for you, because you will go from caregiver/cook/aide back to loving husband.  When you go to see her, there will not be a list of chores a mile long you need to do before you can hold her hand and sit for a while.  She will have shifts of well-rested folks who will get to know her and meet her needs, and you can sleep at night without worrying that something terrible could happen on your watch.
Crushed
Posted: Thursday, October 12, 2017 7:56 AM
Joined: 2/2/2014
Posts: 6735


It's been six days since she knew my or her name.  It's all just downhill very fast.  In a sense I'm relieved since  I'm watching it happen and I know its not due to  MC facility neglect. 

Her brain is just failing. I'm almost beyond tears though not sorrow. 


Heartache and sorrow and sadness unendingly find
Wings on a memory and with them she flies to my mind
She stretched her arms for a moment then went back to sleep
While the morning stood watching me, ever so silently weak

She opened her eyes, Lord, the minute my feet touched the floor
The cold hard wood creaked with each step that I made to the door
There I turned to her gently and said, Look, Hon, it's spring"
Knowing outside the window the winter looked for Angeline

 https://www.youtube.com/watch?v=0VwfDksSGuM


Laurention
Posted: Thursday, October 12, 2017 10:05 AM
Joined: 11/4/2014
Posts: 407


 I personally believe, through anecdotal experiences  that EOAD moves at a faster pace than AD..I'm not sure if that theory is supported by scientific evidence?

My DW blew through the early stages in a matter of months..  The mid stages ? Maybe 18 months. Our Neurologist mentioned that my DW's decline was very fast for Non familial EOAD, though she had seen it before.

My DW's decline slowed (somewhat) through stage 6 ? Perhaps a year?

When I placed her, my guess, would be late stage 6 -early stage 7 ? Interestingly, her decline slowed significantly for the first 5-6 months in Long Term Care..?

In the last 2-3 months, once again this horrible disease is picking up speed.

Today, she doesn't know my name, and can no longer feed herself..She suffers from vivid hallucinations..She actually attempts to talk to people that are not there? She is very unsteady on her feet..My DW can get lost 25 feet from her unit.

I would say we are firmly in stage 7..At the age of 61, while she has lost a lot of weight, she is in general good health. Its just heart breaking to see this once vibrant, and successful woman in the condition she is now.

Now more than ever, I realize the gut wrenching decision to place her was the right one.

Crushed , you and I may have come from two different walks of life..But we both know what a "broken heart is" I'm absolutely devastated. For a crusty old guy, that spent his career punching a time clock, I find myself in my empty house crying more times than I like to think about.

Take care my friend

Mike

 


 
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