M1(1)

Ed1937

Thinking about you this morning. How are you doing?

toolbeltexpert

Ditto.

jfkoc

ditto

M1

I'm so sad you guys.  Trying to work in the garden to keep myself busy, but I just feel sick.  Wishing she were here with me.  Wishing she could just die.  Spoke to her briefly this morning; the caregiver just said he was busy and she was doing okay.  She said, "I can't live here....will we be able to live together again?"  

I wish there were someone there who could give me more information.  

I appreciate your concern.  

[Deleted User]

The user and all related content has been deleted.

Gig Harbor

Victoria I like the idea of the list. I am going to start one.

Jo C.

((((M)))); so wish there was a way to make this easier for you.  By Monday or Tuesday, hopefully there will be much more information that you can garner as regular staff will be back and no holiday issues; they will need time to assess.

That behavior and resistance will more than likely be somewhat worked through; it is part of the process that takes some time and the kind that keeps our hair standing on end.  Your LO also knows how to push your buttons which my LO also knew, makes it a bit more trying.   

Victoria's idea is really a good one. I had kept a log of such items on the computer for other reasons.  When I would go back and read it, I suddenly had a jolt remembering reality for that which my mind was trying to minimize.

Some time far later, I happened upon the list by accident and it was a shock; I had forgotten so much.  It was actually very unpleasant to see. 

If there will be a way, in the future that the disease evolves and it is possible to bring your dear Partner back home again and if it is good and right for both of you, that is still an option.  Right now, a Victoria List would probably be a very helpful tool for today.

Thinking of you each day, and you can be assured we all truly care.

J.

Joe C.

Ed, My thoughts & prayers are with you & your family on this Easter Sunday.

toolbeltexpert

M1 this part must surly be the hardest, I am glad you can get some other things done to help you forget If only for a few moments. Take some time to just rest. I am praying for you both and the caregivers.

Ed1937

M1, here's another thumbs up for Victoria's list. It's worth a shot. I hope you can get things done, and make yourself tired enough to get some sleep. I think I'll try doing some work and listening to music. That's worth a try too.

Joe, thank you. You are another who is always on my mind. I hope it has gotten a little easier by now. I know you were suffering.

JoseyWales

M1 - I've found that DH's facility never calls me unless they have a real reason to call. I dread seeing the number on my phone now. I have called a few times, but have found it's just easier to go in. DH can't figure out a phone anyway. 

Victoria, I love the list idea. I tend to wallow in self-pity at home and wonder why in the world I couldn't handle things myself at home anymore. And then I remember the worst of it, because most of it is pretty fresh in my memory still. At least my DH doesn't ask to come home. I had no idea he was that far along.

Joydean

M1, I have no experience at this time of what you must be going through. I can offer you my heart felt empathy. Your sadness is truly felt. May God give you the strength that you need.

abc123

M1, I can only imagine how much you miss her, every minute of every day. I like Victoria's list idea because it would help me to stay in the current zone and keep the reasons for being in this zone up front and center. I find that dealing with a person we love so deeply causes us to sugar coat reality and to second guess our selves. That's not a good thing for us and especially the person we love. I deeply admire and respect you. I honestly can't think of one thing you could have done differently for a better outcome for either of you. You are both in my prayers and thoughts daily!

M1

So my frustration just continues to mount.  Got an email from the MC activities director asking me if I was able to visit over the weekend and if so, how was she doing?  I had specifically asked them for guidance about visiting and now feel like I missed the boat.  Soo upset.  I can't go in there upset but I definitely am,   Guess I'm going to head their way.  Not good to get off on the wrong foot, but now I feel like a heel for not being there.

There's just no easy way to do this, is there?

Ed1937

Give yourself a break. Nothing that happened is your fault. I'm not saying this is a little thing (it is not), but if little things happen, or don't happen, think about if they are really  worth getting upset about. You can't allow things that can be let go affect your health or her living in the facility. As always, we're here whenever you need a friend.

Quilting brings calm

M1-  don’t get shook up thinking you missed a visit opportunity.  You didn’t,  the activities director is out of the loop.  She doesn’t set facility policy. Doesn’t handle medications etc.  although  she should be aware of policy regarding new residents, she obviously isn’t thinking. She is just touching base with you as a family member of a new resident and trying to show you she cares.  

Touch base with the director and ask if the activity director’s email is an indication your wife is ready for visits sooner than expected   If you word it in a polite way, you won’t feel like  you are stepping on any toes. 

Marie58

I agree with Quilting. The activities director isn't your go-to person. I always try to be polite in communications and I think that goes a long way. You will also learn you just have to let some things go. Just like when our LO is home, we pick our battles. Hope you get a straight answer about visitation and that your first visit goes well.

Jo C.

The Activities Director was simply being polite and was in all probability not part of any coordinated approach.  You did not miss anything at all. When we are desperately emotionally overwrought, we can find places or people to focus our attention or emotions upon; sometimes they have nothing to do with the reasons for the angst.  This was simply an unintended hiccup by a well meaning person.

When discussing visitation with the Director, it may be a good idea to ask who you should communicate with when requesting updates during the adaptation period as well as when you may have questions or concerns.

You have been working so hard at all of this and it is an emotional time; as always, you will want to continue on being part of the evolving solution for the problems. You have worked diligently to get your Partner settled.  Now slow and steady, hold the course; you are right, it is usually never easy, but you will soon find your equilibrium.

We are here and are listening.

J.

M1

At their suggestion, a phone call this afternoon.  She is furious with me, wants to know why I don't get her out of there, she doesn't belong there.  It didn't last long, there was nothing I could say and no way to divert the anger.  They want me to bring in some of her art supplies tomorrow, so I will do that--but I don't think it will help and may in fact make her madder.  Because she will wonder why her things from home are there.  And we literally have a studio full--this is not my bailiwick, I don't know what she would want and what she wouldn't.  Literally a file cabinet full of watercolors alone.   Another file cabinet full of acrylics and oils, another full of papers and canvases.  I'll start with the watercolors, and I guess let them decide how much of it they give her vs. keep in their own art supply.  Apparently she's just isolating in her room the whole time.  45 minute drive one way, I'm going to have to get used to making this commute.  But there is nowhere closer to where we are.

I made Victoria's list, but it didn't get me very far today.  

This is likely to be a long, slow slog.  She's not going to accept anything easily, and I think it's likely that I remain a trigger for a long, long time.  

Ed1937

M1, I'm sorry the news was not better. Hopefully she will find something in there that will at least let her see that it might not be all that bad. It sounds like it probably will take time for her to adjust a little better. I know that doesn't help the current problems.

White Crane

M1, I wish there were someway to make this easier for you and for her. My heart goes out to you.

Jo C.

No way to say sufficiently how very sorry I am; what a dreadful time for you.   I can remember quaking in my boots when first making such a visit  - you may well be a trigger and she may well be furious with you and she knows how to "work you."  She feels inside herself what was effective to get her way all those years you have been together. Being that she had a willful personality as you have described, that seems to still be present at this point in time.  

If I may make a suggestion:  Do NOT visit with your Partner in her room.  Instead, meet with her in a more public space such as an activity room or even in the dining room with coffee or tea.

With my LO I faced some similar dynamics; I soon came to understand that if we met in private in my LOs room, all bets were off and horrendous fury was heaped upon me.

However; if we met in a more public space where others were walking through or even sitting at another table, even though irritated as heck, the behaviors were usually far less florid.  When arriving to visit, I let the staff know I was there and what was what and had them bring my LO to the dining room or activity room where I was. 

I would also suggest not making your visits long ones at this time; instead make them short having an excuse as to why you cannot stay.  Sometimes when leaving, I had to actually say I was going to use the bathroom but actually left to go home . . . . I simply notified staff I was leaving and asked them to get my LO refocused onto something else.  I know it is a long drive, but staying with ongoing tantrums is not the best idea.

Another suggestion:  If your LO is over the moon with agitation and significantly acting out, it may be that her dementia specialist may need to tweak her meds a bit to bring her more comfort from the severe upsets caused by the dementia which is affecting her physically as well as emotionally as it pertains to the quality of her life.  (She would still, if at home, be a significant set of problems for you and you would be alone with it.) Sometimes, if our LO continues to act out and lesser measures fail to help,, that med tweaking becomes necessary not only for our LOs quality of life, but because many facilities do not want to continue long term with severe behaviors.

So wish we could be more helpful.   This is the pretty awful to experience, and being that you are a physician, you are used to being able to put things together for a patient to effectively improve matters.  I found that being in such a position feels terribly impotent to be so powerless . . .

J.

jmlarue

M1, I am an artist - terribly independent and strong-willed. My DH wouldn't have a clue what supplies I would want or need and I would probably be furious over his choices, however well-meaning they might be. Did they give you any idea on the type of art supplies they are talking about? Someone must have talked to your wife about it, but if they can't provide some sort of specifics, whatever you choose will probably be the wrong thing. God help you... Do you know enough about her art to know what brushes, paints, and paper she uses most for watercolor? Would she be unable to give you a list of things she might want? You would have to frame it as providing her with some things to help pass the time, even it it's only for the "short" time she might be there (if you get my drift). I just have a dreadful feeling that complying with a nurse or activity director's vague suggestion, without the courtesy of consulting your DW, will just set you up for a slap in the face.

JoseyWales

M1 - I have no advice at all. I just wanted to say that I'm listening and supporting you virtually.  

Since I placed my DH just 6 weeks ago now, the first few visits are fresh in my mind. They're hard. I'd like to say it gets easier, but it hasn't yet for me.  I will say that DH has settled in a bit and doesn't seem to miss me at all.

M1

Jmlarue, I really appreciate that input. I’ll point that out tomorrow. You’re right, I have absolutely no clue, and we really are talking about the contents of a studio. I think I’ll show up with some things but caution them that they may want to ask her before just dumping them on her. It’s too much.

Quilting brings calm

M1 - feel free to tell me this suggestion is laughable due to her condition: 

If you took some close up  photos of her shelves, etc on a smartphone ( or digital camera) and then showed the phone or camera to her, could she point out the combination of brushes. Paints, papers she’d like first?  Obviously you can’t bring  all types - but if you got her to think  just about watercolors for example?  

Would she be interested in  colored pencils and adult coloring books?  

FYI- it will take several weeks for her to settle in - and yes, you will be a trigger until then. Don’t get discouraged by these first few days. 

The top of your list needs to say ‘ she threatened me with a knife’.  

ButterflyWings

M1- my heart goes out to you. “If only...” how many of us could finish that sentence a hundred different ways as we wish for what is no longer prudent and possible, due to dementia.

I just barely made it through DH’s first respite stay and some apparently inevitable, or a least not uncommon, hiccups. I did not post much during this week and a half “off” because several forum mates including you, are going through much worse right now.

This idea may seem far-fetched, but we hear so much about some highly functional LOs being convinced to be “helpers” at their MC’s— I wonder if your dear partner might be talked into helping lead a short, basic painting 101 or other art demo or class... maybe even for limited family and resident participants? 

Perhaps the activity director or someone there she may have a rapport with, might suggest this? Just for now, it might be more believable and acceptable to her coming from someone other than you,

I hope the pain lessens soon. I understand. You are doing the right thing although it feels so wrong. I hate this disease so much.

M1

These are all good ideas and I will discuss with activity director in the morning. I do think she should have a say in what supplies I bring- she has three easels, for example, drawers of papers and canvases, at least three sets of brushes. I'm going to start with two little watercolor paint sets, as opposed to the six file drawers of paint tubes organized by colors (and that doesn't count the acrylics and oils). I'm so out of my depth here.  Right now I think it's too soon, I think she would refuse almost anything except the basics. Qbc I have no idea if coloring books would interest her now, they certainly wouldn't have in the past. 

unfortunately I'm not optimistic that this will work without a lot of individual attention, which I doubt they'll have time to give her. I don't think the executive function is there.  This MC like most is set up for group activities, which never was her thing. With only 24 beds they're just not staffed for it.

Bw I do want to hear how the respite went.....

Jo C.

Thinking of you.

J.

jfkoc

You wife has collected over  the years but she is an artist and will be fine with a paint set or red yellow blue tubes. The water color brushes are pointed. If sable they are very expensive so maybe a #9 to start incase they get mixed in with those at the facility.Try to find some 400# paper.

Crushed

JoseyWales wrote:

 I tend to wallow in self-pity at home

Stop using that concept right now

"wallowing in self pity" was invented as a concept to blame grieving people for their inconvenient grief . 

In my lifetime it was used to tell rape victims or grieving parents of a dead child  to

 "get over it"
 It simply is not helpful
 
 I saw DW this morning .  She has been in memory care for 4 1/2 years.  It hurts every time I see her.  I cope by coming home  and staring at the wall or garden with a cup of good coffee   and just remembering  something wonderful we did together . It has taken years of therapy to get me here.