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    • CommentAuthorRona
    • CommentTimeJul 15th 2016
     
    Well I took Lisa into respite for a week yesterday the same place she went in March, great place, and this time it went much better. We had a good morning said let's go for a drive put on some music she was happy, I hadn't told her I was taking her, we pulled up in front got out holding hands walked in, she sort of recognized the place I think. The nurse came out and said hi Lisa come on I'll take you down to your room, she still had no clue, we walked down they chated a bit, other aides said hi Lisa they all remembered her, I said I had to get something out of the truck so went outside and got her stuff then sat down and had a talk with the head nurse and the administrator. We talked about wether I should go back and say good bye or just leave she was just having a coffee and cookie waiting for me doing ok and going back may set her off but it was up to me. I left but boy it didn't feel good. I phoned a couple of hours later and she was sitting talking with another lady all was going fine. Why does doing what you know is right just make you feel so awful?

    I came to the realization a few days ago that after this respite I did not want her to come home. Wow! I cannot keep going through taking her somewhere and just leaving her. Lindylou again your comment about still having a bond with your partner but it not being a partnership anymore made me really think. This has been a long journey. In hindsight it was 2006 that I can remember the first time Lisa expressed that she was having trouble putting a deal together at work but really there were many behaviours in the years prior where I would think where did that come from? In 2010 I took over handling bills as she could no longer figure it out. We had been invited to go to Maui with friends but Lisa was nervous about it in her words she didn't want them to see how stupid she was. We went and had a great time. I think by then we were in the mid stages. 2011 we went to a neurologist but she stopped the testing. Lisa was so upset going because we just had her father diagnosed with Alzheimer's month"s before and she was afraid she was going to get the same tests. She did get the same tests. The dr. Didn't know if it was anxiety or what but just said we had to get that under control before anything could be determined. In May 2012 we finally got the diagnosis it has been along journey but still hard to believe we are at this point and that I am saying I don't want her to come home. I I love her dearly but the Lisa I love isn't really here anymore. She still dances to the music I can still make her laugh but she is not here. Just had a tear writing that last line. Went to bed about 11 last night read myself to sleep then woke up at 3am with things just racing around in my head so I got up to write this.

    So what do I do now? I am going to post this then write another post right away to finish I just had s fear that I am going to write this long post and something will happen and it will all disappear. So going to get a coffee and will be right back.
    • CommentAuthorWolf
    • CommentTimeJul 15th 2016
     
    These are extreme situations we face.

    It's the one we love and our partner and we gradually get pulled into a complete upheaval where everything that matters, everything in our lives, is being obliterated.

    It's important that we understand that whatever strain we are under, we are still people - and in the face of this kind of life changing and horrible guantlet we go through, we are going to have reactions. They're not just reactions. They're real.

    Try not to beat yourself up for having feelings about this enormous and terrible thing going on. In fact, anything you can truly understand about yourself going down this road is almost certainly going to help you as you go down it.
  1.  
    I'm sending you all the support I can by ESP. This has got to be such a hard place for you. (Hope that coffee was good and strong.) Don't forget that placing someone is still taking care of them--just in a different way, and with lots more help, 24/7...which you as one person could not possibly do.
    • CommentAuthorRona
    • CommentTimeJul 15th 2016
     
    I'm back coffee in hand. So where to from here? If you followed any of my previous threAds I did a lot of looking and came full circle to being listed for the two facilities in our area, close to home and I would be happy with either one. Both nice bright pleasant enough places. Have been on the list since December and for a couple of months now been told we are at the top of the list but no movement. So after dropping Lisa off I went to see our case worker and told her I cannot keep going so what are the options for next week. Well the only thing she can say is if you cannot keep going then you take her to the hospital and tell them you cannot look after her anymore? That I will not do. Another option expand the area to include more facilities. If you recall In March when I last took Lisa to respite I was a mess they offered me a facility in larger city a bit further away I was away at the time with my sons and refused as said I couldn't deal with it. Had to fight to stay On the list after that but managed it. Actually had visited the place when looking for lisa's parents and wolf it sounded like what you described in RSA's thread a dismal place seemed like One Flew Over the Cuckoos nest. But then wolf you said that you realized that she was getting the care she needs and wAs well looked after. I am coming to that point. Since Lisa is still so young, healthy, looks great my feeling has been she needs a bigger place with more going on she is too young she still likes to laugh and dance she cannot be in a place like that! However I am feeling maybe I am not being realistic? The head nurse where she is at respite feels that based on her last visit Lisa may be better off in their smaller garden view area for dementia patients, less stimulation she seemed lost in the non dementia area too big for her??? Also she was worried that she looks more like one of the staff and somebody coming or going might inadvertently let her out, don't know if I buy that one. Also the nurse that has been giving me respite time staying with Lisa In our home for two days at a time while I get away feels the same way as does our caseworker. By the way home support nurse (I pay her privately and this has kept me going) is getting burned out as well says it just takes too much out of her she needs another day to recoup and doesn't know how long she could continue the overnights.

    However I am still not willing to just put her anywhere. Have come up with another option looking for private respite beds and found one I am going to visit today. Only 11 rooms but comes recommended and seems nice. Again I have thought bigger is better more going on but now I am not sure. Again I find it hard to believe I am at this point. Other than going through her drawers, going around trying to pick up the bugs in the house, trying to clean or going in the yard and picking up weeds she no longer does much we walk the dog and she dances to the music but tv is beyond her. She will just sit especially when The weather is warm she will sit outside. I don't want to keep moving her around but feel that finding a place until permanent placement is a good option it takes too Much out of me taking into respite and leaving her. Also I am burned out, done.

    What to do? What are others thoughts? Even though rationally I know I have done what I can and have nothing to feel bad about why does it still feel awful. Thinking of her not coming home is a relief but I am also feeling lost. I want to go on with my life, find me again, but reading a lot of your posts I know that is not easy. I also know that my role will change and will still Not be easy. I will never leave her I will always be there but hopefully there will be more room for me.

    Last option bring her home.
    • CommentAuthorWolf
    • CommentTimeJul 15th 2016
     
    Rona, give me a few minutes, I'm replying.
    • CommentAuthorWolf
    • CommentTimeJul 15th 2016
     
    There are layers here.

    If you bring her home you have still discovered something. Bringing her home likely changes nothing about what choices you have. You understand more about your thoughts in either case now.

    You said the support nurse is tiring out. That sounds somewhat different from your own speech both here and in the meandering thoughts thread. Your comments about the nurse saying it's beginning to take too much out of her is the clearest marker that things are getting harder.

    Another line of thought is how Lisa has been in the respite center. If Lisa has been comfortable (as my wife was) then she is comfortable and other facts may be less important to her well being now than they are important to you. (where she is now)

    All roads into the future are not good. Not just this one. We don't know which choices would have been better.

    Most people have a deep unwillingness to let go of the conception that our spouses are still in there whole and that the disease is a barrier between them. In other words that they are themselves; somewhere in there. That was common even among the pros. "She so looks forward to your visits. I told her you were coming and she's been happy all day." Except you could detonate nuclear weapons right beside her and she wouldn't blink. It's all good but it's not true. AD rusts out the very place where the operational personality resides. When I touched Dianne and spoke she still seemed to know me a bit for some time after all communication or even eye contact was long gone. Lifetime familiarity runs deep into the marrow and love and partnership are commitments beyond just personality.

    Listen to yourself. That's who you have to live with. Advise from professionals ranged right across the map especially surrounding this topic.

    I feel for you Rona. This is very hard on us. The whole thing is. I'll keep an eye open for you if you want to talk.
    • CommentAuthormyrtle*
    • CommentTimeJul 15th 2016
     
    Rona, First, you still have almost a week, so don't panic. That will just interfere with clarity of thought. Second, can you get any more specific information about the likelihood of upcoming openings at the two facilities you are waiting for? I.e., when you talked to the case worker, did she actually get an update about the situations at those places or did she just give you the canned advice about taking Lisa to the hospital?
    • CommentAuthorRona
    • CommentTimeJul 15th 2016
     
    Myrtle the case worker was going to phone the Intake person after I left last understanding was we are basicly next or maybe 2nd in line but that can change as others needs change it is not the time you are on the list it is who is in greatest need. Where Lisa is now is one of the two facilities and I talked to head nurse and her comment was that she saw nothing on the horizon? But then things can change quickly so who knows.

    Thanks for your comments and concerns wolf will keep you posted. I am off to visit that facility now.
  2.  
    Rona, I'm so sorry that you find yourself at this crossroad. I remember it well. Lately, I have not commented much but do try to check in regularly to catch up.
    Back in late 2013/early 2014, I was desperate to place my husband and nothing was coming up in the public system (I am in North Vancouver, I seem to remember that you are on Vancouver Island) but fortunately I was able to find private placement (Sunrise) almost immediately and I took it even though it was very expensive. I figured I could afford it for at least a year, thinking that surely in that time a public bed would open up, and also felt he would benefit from the outings and programs, especially musical, that were offered. My expectations were never realized as his behaviour became agitated and violent and after only three months he was taken to hospital where he remained another three months. At the end of that time, when they felt he was somewhat stabilized, he was a priority for the public system and he was placed in a very nice facility and did receive wonderful care. His decline was so fast overall and he did pass away last year at 65.

    Our story was not the norm but I still have no regrets about taking the private placement initially......I needed it for my sanity. Remember that it is important to
    look after yourself as well. I wish you the best.
    • CommentAuthorLindylou
    • CommentTimeJul 15th 2016 edited
     
    Rona, Since I first started on this website in January, I have always felt that your Lisa and my partner were at approximately the same stage in this dreadful disease. This puts you and me in the same stage of having to deal with things, some the same, some different. About my partner, I keep thinking her needs, versus my needs. Both sets of needs I feel are important. Up until now I felt that my partner's needs could be better met at home than in a NH. I based that on her happiness. She was happy at home for the first four years or so, and her happiness was contagious. So I could deal with the AD. She is far less happy, maybe truly unhappy, now, and way more anxious. She can dismantle the complete house in a matter of half an hour. And its not like she is doing these things because she is happy. It is because she is feeling desperate. We no longer share meals, because "she has things to do first" - pouring vinegar into root beer, emptying drawers, and cleaning the sink with dirty laundry. If she did not go to daycare 4 days a week, I'd have gone crazy a long time ago, because the deconstructing of the house is constant unless she is sleeping in a chair or bed. She wanders around the house at night while I am sleeping - not safe. I thank God daily for daycare. She gets good care here. She'd get good care in a NH. At this point I truly don't believe she'd be happier in either place. So the focus now is on my needs - and truth to be spoken - maybe the focus on my needs should have come sooner.

    One thing you maybe should know about me is that I am a retired Activity Director and my career was working in nursing homes. They can be good places. And it does sound to me like your wife adjusts well during respite when you are not there. Staff there work eight hours, not twenty-four. They are fresh and can take on the responsibility of caring. It is their job to keep her safely involved and engaged. At a certain point, (now?), I ask the question, does it really make any difference whether my partner is in NH or at home. I really don't think, for my partner, that it does.

    The decision aint easy. Want to make one suggestion which is about the squeaky wheel. Desperate situations do float people to the top of the list, so if you have medical or family issues that might be a factor that could speed things up for you if mentioned to SW or NH, do so.
    • CommentAuthorJazzy
    • CommentTimeJul 15th 2016
     
    I am so glad both Rona and lindlou have said what they are feeling. I have had my eyes opened by your comments about doing for us now. Your right Lindylou, the staff can take care of him. I need to take care of me. I make his care and life more important then mine. He gets good care and has lots of activities. I have been letting his disease run my life for so long now that I feel guilty if I do something for me.
    Time to stop that and look for activities for me, just me.

    Thanks

    Jazzy
    • CommentAuthorBev*
    • CommentTimeJul 15th 2016
     
    I went through eight years of caring for my husband, maybe more, through the hallucinations, the crying, the hollering at the neighbors, the up at night, 2 am, puttering around in the garage with all the lights on, wandering, etc. I was told to put him in a nursing home a long time ago, assisted living wasn't an option; he couldn't have managed that.

    I was forced into putting him in the nursing home because of a hospitalization, where he almost died. The nursing home my family chose had a dementia floor, where he was eventually placed. Like Wolf, it was the worst night of my life when he went into that nursing home. I knew he would never return home. I cried and cried, until I couldn't cry anymore. He's been there for almost two years now. He is in the end stage of the disease.

    Rona, a larger unit for a dementia patient, I think, only confuses them. Our nursing home floor has a corridor that runs around the whole floor, where residents can walk and not get lost. They can easily find the dining rooms and their rooms. Of course, mine wasn't able to do that by the time he went in. I can't say this was easy for him either. The first year was difficult. He just kept begging to go home. In hindsight, I shouldn't have gone there every day. Now. I'm so relieved he's there, even though I am not doing too well emotionally. I wish it was over. I can't stand to see him going downhill like I watched so many others do in the home. I kept praying he would go quickly, but that isn't happening. His body is failing him, just like his mind. They are trying to keep his muscles from contracting but I can see it is hopeless. I thank God every day I have put him somewhere where the staff and the doctors are kind to the residents and diligently care for them. If there are any complaints, they are minor ones.

    So, Rona, like so many others here have said in the eight years I've belonged to this site, putting your partner in sooner rather than later is the way to go, no matter how guilty you feel. I didn't listen and waited too long. And, don't get yourself hung up on how pretty the place looks. That's for the people who visit, not the residents. The way the staff cares for them is the most important consideration.
    • CommentAuthorRSA
    • CommentTimeJul 15th 2016
     
    Rona, I wish I could offer advice or comfort. My wife is not as well off as your Lisa sounds, and so she's comfortable in a place with few amenities but caring staff. I know the feelings of guilt and regret you describe; I have them whenever I walk out of my wife's room, to leave for what used to be home for both of us. That started the first day I moved her in, and those feelings always follow me after I leave her.

    Sometimes you reach the end of your endurance, whether it's physical, mental, or emotional. Maybe Lisa will be happy with the structured activities of assisted living or memory care. And you'll get some relief. Here's something I've realized recently: if you don't think of yourself as a saint or a hero, you can still think of yourself as a good person, doing the best you can. That is, friends and family have told me positive things about the way I've cared for my wife (others here have gone through a lot more than I have, which gives me a sense of humility). That's helped me get through some rough spots, knowing that others thought I was doing the right thing, but moving my wife into an assisted living facility was also the right thing, at the right time. Being aware of that doesn't make it any easier.

    I hope I've made sense in typing this out; I have only good thoughts to send you.
    • CommentAuthorRona
    • CommentTimeJul 15th 2016
     
    It has been a hell of a day. After I left her yesterday and she knew I wasen't coming back she apparently ran around opening and slamming doors trying to get out banging on the windows etc. They started giving her adavan and she has settled. I didn't sleep last night then got up early this morning and went in search for other private pay respite beds I did end up with 3 options. I went back to see our case worker and while there my phone rang it was a facility in a neighbouring town saying she has been placed there!! It wasen't on the list but I guess when I said I don't want to Bring her home that got things rolling.

    Well it is a place I hadn't considered and I think my vision was tainted when I visited before. So with fresh eyes and a new attitude I went there this afternoon and was very pleasantly surprised. Instead of 15 minutes away it may be 20-25 minutes no big deal. It is a newer building with people put in pods for there common areas and eating. It is bright and cheerful. She will have a private room with a shower in the washroom a bonus. Her room is on the first floor with a garden view nice sunny outdoor gsrden areas to walk and sit in. Staff seemed very. Ice and have gotten good reports about the care. I am pleased but what a roller coaster of a day.

    I now have friends who are going to take me out for dinner I wasen't going to go but they talked me into it so I have to get going I hope I can keep my eyes open and be somewhat good company. They said it is ok if a shed a tear what a day.

    Thank you all for your comments and support it means the world to me. At this point it seems like it couldn't have worked out better. Hope so Will write more tomorrow.
    • CommentAuthorWolf
    • CommentTimeJul 15th 2016
     
    Definitely go to dinner.
  3.  
    Hope you got some sleep last night. Thinking about you this morning--sending moral support and all good wishes by ESP.
    • CommentAuthorRona
    • CommentTimeJul 16th 2016
     
    Thanks Elizabeth had a nice evening out but didn't sleep that great awake most of the night. Lisa is not settling well. Afraid anxious and delusional. Lately she had more bouts of these feelings at home as well afraid of things a lot, talking to the lady in the mirror thinking she was trying to hurt her this type of thing. I am afraid the move to respite has just made these behaviours worse. We really were not using any drugs and they are giving her adavan 3 times a day to calm her they have to keep trying to redirect her, she does redirect well. She keeps looking for me and thinks she sees me thinks I am still in the building. I think I was fooling myself as I thought she would just slip right in and adjust well the last time in respite was not like this. The Nurse I talked to last night mentioned that she sees a major change in Lisa's abilities and behaviour from when she was there in March. I guess another confirmation of what I see and another reason to know I have done the right thing. I don't think I am feeling guilty as much as a deep sense of sadness and loss. How long has it taken others to settle? I know RSA it seems like your wife has adjusted quickly but also seems she may not be as aware of her surroundings as much as Lisa is. Everyone I guess is different but this I am finding very hard thinking of her afraid and anxious I wasen't prepared for this. I am thinking should I try and go in to calm her or would that be a disaster.

    Now I have to think about taking her to her new home on Tuesday straight from respite. I worry about how this will work and what that will do to her current emotional state. I am wondering if there is some sort of transportation that can be arranged to take her to the new home without me having to do it. I feel she will be angry and upset and I know I will be an emotional wreck. Good fortune I ran into my caseworker when out last night and she is working today I hope she can help me with this. I am going to get ahold of her today. Long term care home where she is going will have extra staff available to help when we get there I am just worried about the pick up and drop off. They are only about 15 minutes apart.

    As mentioned even though not one of the facilities that I was thinking of I am happy with the placement. They will paint the room today and I can start and move some of her things in tomorrow. It is only a few years old so designed around having smaller pods but still has the ability to walk around other areas, bright good size private room with shower and pleasant outlook. Nice sunny garden areas with easy access. Staff seem nice and care good from reports I have been given. So here we go.

    She has been referred to (SORT). Seniors outreach team for assessment to see if there are any other suggestions, basicly drugs, to help her with the behaviours. This is a whole other topic what is the right thing at this stage?

    Thank you all again just being able to get these thoughts and feelings out helps s great deAl and knowing you are out there and will respond helps even more.
  4.  
    Rona, You are correct to not to want to do the transport yourself. 1. Could you hire a taxi and have the caseworker travel with Lisa? 2. Or, could you time it so one of the nurses or aides could ride in a taxi or facility vehicle with her right after their shift ends? If you make it worth their while ($), someone usually needs a few extra $$.

    Lisa is already stressed, so make as stress free for you. Start right now by knowing what your limits are and figuring out how to get things done that take you out of the hot seat.
    •  
      CommentAuthormary75*
    • CommentTimeJul 16th 2016
     
    Or you could hire an aide from a care agency. I found that very successful. And, as Marche says, it will take that stress away from you. It's worth every penny.
    • CommentAuthorJazzy
    • CommentTimeJul 16th 2016
     
    Great big hugs going out to you and your special lady!
    Have a nice dinner with friends.
    Shed those tears if you wish.

    Hugs

    Jazzy
    • CommentAuthorRona
    • CommentTimeJul 16th 2016
     
    Since it is a weekend things have to wait until Monday. The respite placement should be able to arrange transport either by handy dart or by a non emergency ambulance. That is a relief then can see maybe I can just meet her at her new home? She still is having trouble settling and is anxious.
    •  
      CommentAuthorCharlotte
    • CommentTimeJul 16th 2016
     
    It might be just as well she does not settle in since she will be moving on Tuesday. Hopefully when she moves going into a room that is personalized for her will help with her accepting the change.
  5.  
    I agree that you should not be doing the transport in your private vehicle. The respite place is discharging her, not to you, but to the permanent facility. It is their responsibility to get her over there safely. You can either follow the transport vehicle in your private car, or else just be at the new place ready to meet her. I don't know how these things work in Canada, but in the States, it is a facility-to-facility transfer, and they are responsible for handling it--not you.
    • CommentAuthorLindylou
    • CommentTimeJul 16th 2016
     
    Warm thoughts and prayers going out to both you and your wife as you go through this week. Life should not be so hard, but it is.
    • CommentAuthorRSA
    • CommentTimeJul 17th 2016
     
    @Rona: "I know RSA it seems like your wife has adjusted quickly but also seems she may not be as aware of her surroundings as much as Lisa is."

    I'm sorry it's so difficult for Lisa. You're right about my wife; when I took her on trips to see the family within the past year, and once to a hotel because of an extended power outage, she behaved no differently than at home. And it helps, I think, that her friends and I were with my wife during her move and almost every day since. Good luck. You're in a terrible position, but you're working through it.
    • CommentAuthorRona
    • CommentTimeJul 17th 2016
     
    Thank you lindylou and RSA. Unlike you RSA I have not been to see Lisa they have advised against it that is very hard thinking of her in the state that she is in. Apparently For the first two days she was going around saying I am going to kill my husband for putting me here. The fear anxiousness, and the delusions are not new but being in respite just moved them to a whole new level. Hard to know the right think to do?

    The respite facility are going to arrange transportation to her new home which I am relieved about. Now I am wondering should I meet her at the new place. My thought is to be happy to see her ask her how she is, tell her I missed her and love her. To say that she needs to be here as they are trying to help her with how she is feeling. That I have not been well and need to see the doctor and rest so need the time on my own while she is here. That she asks me just about everyday to help her find her own little place well this is what I found for her and we need to try it for awhile to see if we can both get better. I have going to have it set up with a number of her things from home so hopefully she recognizes it as hers. I know there is no reasoning so Am I dreaming here about this approach?

    The other option is leave her alone Don"t go at all until she can settle. I am starting to fear that if she keeps this up she may end up in the hospital. This is so not what I expected and so not in her character but I have been told this is another stage in the progression of the disease.

    Her Mantra has been "be happy". She walks around telling everybody that. I see her dancing and laughing not like this.
    •  
      CommentAuthormary75*
    • CommentTimeJul 17th 2016 edited
     
    I have tried both approaches and found the leaving him alone the best. It is amazing the adjustments they can make on their own. And the staff is able to help them through this transition. It is very hard on you — harder on you than on them. Take this time to catch up on your own needs.
    • CommentAuthormyrtle*
    • CommentTimeJul 17th 2016 edited
     
    Rona, I don't think your situation is comparable to most people whose spouses are entering LTC. You are dealing with respite+LTC. Since the purpose of respite is to give the caregiver a break, there are usually no visits. So except for those who admitted their spouses directly from respite (and there are some on this website), our experiences are not comparable to yours.

    For myself, I visited my husband every day during his first weeks in LTC and took him out of the facility often. My goal was avoid making him feel that I had abandoned him or that he was trapped. That worked well for us but my husband was more confused than Lisa seems to be and anyhow, he had not been in respite before that. You know Lisa better than anyone else does and I think you should trust your instincts on this. And I would not readily accept the explanation that her behavior is attributable to "the progression of the disease." That's an easy out. The story you propose to tell Lisa is similar to what I have heard others use. It might work and it might not. Good luck with this. You will get through it. As lindylou said, life should not be so hard, but it is.
    • CommentAuthorRona
    • CommentTimeJul 17th 2016
     
    Myrtle thank you my instincts tell me to be there and that is what I am going to do. I also don't want Lisa to fell I have abandoned her. So arriving at a new place not knowing what is going on and not knowing if I even know where she is just does not feel right to me.
    • CommentAuthorpaulc
    • CommentTimeJul 18th 2016
     
    My I moved my wife to her second ALF there was a very strict no visiting rule for 3 weeks. This was because my wife was in a special evaluation and medication and behavioral adjustment program and they felt that any visitors would result in the evaluation going back to zero and starting over again. I wasn't prepared for the first day, I thought I would say goodbye but they whisked her off to lunch (which she enjoyed) while I and her sister did the paperwork. In this case I trusted the ALF, this is something they had done many times, though I was leery due to bad management at her previous ALF. But every case is different, both the one with dementia, the caregiver and the facility.

    Leannah was relatively aware of what was going on, she knew she was moving into a new ALF (though she thought for only 3 weeks) and she knew due to violent episodes that no other place was going to accept her. The staff worked to bond with her and to explain to her that I hadn't abandoned her, but even with her comprehension she didn't get it. It might have been better if she was less capable at the time, I know some people where their loved ones adjusted much faster than my wife.

    Lisa's sense of time can be an important factor. Now my wife is not aware of the days nor when I am visiting (though my visits are very regular). For some people an hour, day or week isn't relevant, which can be good (they aren't aware that you have been gone for so long) or bad (after 5 minutes they forget that you had just visited and want you there now).
  6.  
    Just like with children, Rona, don't do too much explaining. Bring the conversation back to something nice like "I'm here now, let's take a walk." or even, "I came as soon as I could, I always do. Let's look at the pictures in this book I brought." Even in early stages, explanations can get off track very easily, so train yourself not to explain. Granted, it is very hard to do, especially if you have been explainers to each other. But that was then and this is now.

    Everything is now framed in the despicable "new now." As you are finding out, you are the only flexible person in the relationship anymore, so any adjustments must be made by you. If you haven't grown to hate your role, you might, especially in times when a touch of empathy or love would be so soothing and needed.

    Be on guard for your own well-being. Spousal dementia is a one-way street and will drain your gas tank in the blink of an eye.
    • CommentAuthorFiona68
    • CommentTimeJul 18th 2016
     
    Rona, all good advice above.

    For what it's worth, when I moved my husband into Memory Care facility, I told him that we both lived there now because we had to do major construction on our home because of storm damage (enter your own special fib here!). I told him "this is your room and my room's down there". Luckily, he never asked to see my room but I was ready with a couple of fibs for that too. I visited every day at the same time for 2 hours and never wore my coat or brought in my purse … just walked into the room, like I would have done at home. I always left him as they went in to dinner - telling him I had to go to the office for a few hours, which he was familiar with. I never again mentioned the word "home". For the first few weeks, he often asked if I liked the place, but never asked to leave. Of course, he was very anxious at home and his anxieties were much lessened when he went into this calm but structured environment.

    It's not a bad idea to get a sleep aid for a while if you feel you need them. I needed sleeping pills for about a year, then didn't for a couple more and am back on them now because without them I cannot sleep at all. And we cannot be at our best for them if we are not rested and healthy. Sending hugs and warm thoughts your way.
    • CommentAuthorRona
    • CommentTimeJul 30th 2016
     
    I think we are moving in the right direction Lisa is settling in but it seems like a couple of good days then not so good. I find my visits very hard she is trying to figure out what all this means. She wants Jake our dog but not so much me. Thursday we had a great visit but the comments were like "are we still married, do you still love me, you just want me to go away, I cannot live with you anymore I have to go awAy, I want my own little place just jake and I". I reassured her that we were still married and I still loved her, she does have her own little place now and we are still together just a bit different. She was great we had a little nap together then at dinner time I told her I was going home to feed jake and she was fine.

    Yesterday I took jake as soon as she saw him she grabbed him and told me to go away, she didn't need me I was not a nice man. She ran off down the hall with jake got to the front door while somebody was going out and before you knew it she was out front. She didn't go anywhere and came back in with me ok but not good. Jake I think is the trigger but she is always asking for him. Then her comments again cannot live with me, I scare her, I am mean to her, I hurt her. Just go away and leave me with jake. However taking jake seems to set her off jake also does not want to be there you can tell and he just tries to get away from Lisa. Took him off leash in the courtyard and before you know it he is threw the fence and out front.

    I just want her to find her happy place but then I think to find that place doesn't she have to let go of her past? Does this mean she has to forget about me? I am not ready for that but I want her to be happy not Upset. When I see her now don't know if she is going to come up and give me a hug or start yelling at me? I am going to our cabin for the weekend and not going in to see her. Is this best who knows? I also think that at this point I am not going to take jake in, she will ask for him so not sure what I will say.

    Having said this She is however adjusting well. She gets afraid at times but basically doing ok. They keep her busy. The other day I phoned and talked to the LPN she had helped get her ready in the morning and Lisa was pleasant said she wished she could help her every morning. She then had breakfast, went upstairs to help deliver papers, then when I phoned at 9:30 she was out with the walking group? There is a woman who works in the building a few hours most days as a companion happens to know my sil. So I have had her coming and spending an hour with lisa most days. Yesterday they went out to a thrift store, she has taken her for walks and we are also going to start them going swimming to the local pool so All good. Also the worker I have had at home is going to continue seeing Lisa. I am trying everything I can to make it as good as I can for her just wish our visits could always be good.

    What a difficult time I know there will be bumps in the road but It is so hard getting through this.
    •  
      CommentAuthorCharlotte
    • CommentTimeJul 30th 2016
     
    I agree - stop taking Jake. If she ask say it is too hot out for him to ride in the car because you stopped somewhere before you got there or some other little fiblet.

    It is good that others are getting her involved in activities. You must remember she has only been there a short while. Many have said it can take 3 months or longer to adjust. And face it, she may always stay this way to you. Just be glad she is not giving them problems. I know it hurts when she is not being nice to you, blaming you, etc, but this is the new reality. Often our spouse can be like children: great for others but when they get home they can be the opposite. My husband tells people in the park he doesn't like day care (I call it senior center) but goes to make me happy. Truth be told: according to them he thoroughly enjoys himself visiting with others, making them and himself laugh. When he gets home seems like the bus driver (who always seems to be different) he always has laughing. In fact, when they pick him up, he has them laughing by the time they drive out.

    Hope you are able to enjoy your weekend at the cabin. Remember she is in good hands and you are only a phone call away if there are problems.
    • CommentAuthorRona
    • CommentTimeJul 31st 2016
     
    Thanks Charlotte I just reread your post. Woke up thinking may be I should head home to see her then your comment remember she is in good hands I will stay then get there to see her tomorrow. Also your comment about this is the new reality she may always treat me this way. Hadn't thought of that and hope not. Hoping this is a phase and it will get better. I phone and although anxious she is safe and being cared for I have to let go.
    • CommentAuthorRona
    • CommentTimeAug 21st 2016
     
    Well we are coming up to 6 weeks since Lisa has gone into care, the first while was very rough but things are starting to settle. I have been visiting just about everyday and have remained active getting myself out and about. Some days I feel strong and others not so much right now it is not so much.

    Although getting better I find the visits hard, she is still afraid, afraid someone is going to hurt her, says she does not like the place but then again likes the aides and nurses. Lisa always wants to go home, does not understand why I leave if we are married why am I not staying with her or taking her home. As I said before she is caught between the two worlds. Yesterday when I tried to leave she didn't want me to go and said that if I was just going to leave all the time don't come back. I have usually just slipped out but yesterday didn't work so well.

    After seeing Lisa yesterday morning I headed to our cabin for the night as it was our annual beach party thought might as well go. I didn't do so well had a hard time holding back the tears. I tend to get emotional when I talk to people about how Lisa is doing. One comment from a friend, not a close friend but a friend, asked me how she was doing, I got a little teary and she said are you ok to talk I don't want her to be just forgotten. We had a little cry then talked about Lisa. It was a good comment as I realized that I can go out and make like everything is ok but then it is like she is forgotten. I want to go on but realize my emotions are right under the surface. Last weekend I went to an old friends wedding, we connected after many years. Saw friends I hadn't seen in 25 years it was a very good time but again when I talked about Lisa I got teary I am not ashamed about that. People understand and if they don't well too bad.

    I am really starting to realize that I am truly on my own she is not coming back she is never coming back. The tears are flowing as I am writing this. I thought I was stronger and I will get stronger but this is a hell of a journey.
    • CommentAuthorpaulc
    • CommentTimeAug 21st 2016
     
    This is probably a harder transition for you than for her. I have a few suggestions.

    Be sure that you get reports about Lisa from a staff person you trust. You want to know about her behavior when you aren't there. Many of our LOs are doing better when we are not there than they report. My wife used to tell me there was nothing to do and staff told me she was involved in more activities than any other resident. You should know if she asks staff about wanting to go home or only asks you. If she only asks you that is a sign she is adjusting. It is good that you slip out rather than let her know you are leaving.

    Make sure she has an opportunity to learn to depend on staff and not you. This is probably the hardest change for us. If you are there 5 hours a day every day she will insist that you do everything and not ask staff to do stuff for her. I as assuming that you trust the staff.

    It will probably take a long time for you to adjust to her not living at home. Even though I have accepted the change a long time ago I find that I keep making small adjustments.

    There is no need to feel strong every day. Your worser days possibly means that you have accepted some change and it hurts.
    • CommentAuthorAmber
    • CommentTimeAug 21st 2016
     
    Hello Rona,

    Now comes the time for you to look after you and get your health back and keep it. You might say oh I'm fine but when a year passes you'll realize how much this had taken out of you. Eat really healthy plant base whole foods, get out of the house and go for a walk, get back to being/staying social. If you're sleepy sleep!

    Im coming up to 3 years since he was placed and finally this summer I'm getting back to feeling normal and healthy. I got my smile back. I've been able to compartmentalize his illness so after a visit I have my sad time on the drive home them with great gentleness I put it back in its compartment and get on with my life. It's really hard and has taken a lot of time to get to here but I have and hopefully you will too.
    • CommentAuthorJazzy
    • CommentTimeAug 21st 2016
     
    Like Amber it will be three years on the 19th of September and it is just now that I am starting to do the things I had given up when he went to LTC.
    I heard him always telling me how bad it was, how unhappy he was, how things weren't right. He kept telling me stories about how upset, unhappy, stressed and depressed living there.
    I finally went and asked staff from different shifts how he was and they told me a different story. His Doctor called me to tell me how well he is doing. It seems he sings quite a bit and laughs. They tell me he is their inspiration. It's a totally different story then he tells me. He is manipulative and charming when things go his way.
    I have walked in when he didn't expect me and the turn around was so fast. I watched him through a window where I could see him but he couldn't see me before I walked in. It was like a light switch was thrown.
    I was ready to bring him home as you are but now I am so happy I didn't. Not for his welfare but mine he is still there and will stay. I only go and pick him up twice a week for coffee out and I don't visit there. The Doctor advised me to only visit him for short periods. No long visits and I am so glad I took his advise.
    I went through two and a half years of upset and guilt.
    Take care and give it time. He is not advanced as Lisa but far enough. He needs to be there. I need to be here.

    Hugs
    Jazzy
    • CommentAuthorRona
    • CommentTimeAug 22nd 2016
     
    I don't know what to do the staff tell me she is adjusting well. When I leave I have been just saying see you later but then I think she wonders around looking for me. At times she thinks I live there too. It happened again yesterday when I tried to leave she got very upset, crying and pleading me not to go. One of the aides got her distracted and I slipped out it is awful going through that. I reassure her but it doesn't matter she just wants me with her she tells me she gets afraid.

    Right now I am feeling that I shouldn't visit for Awhile but if I don't I feel lost. I am going to try and get a better handle on how she is when I am not there and see what the director of care thinks. I know one of you had said " you know her best so do what you feel is best". Right now i feel are visits are basicly ok but she is continually telling me she wants to go home or she wants me to stay with her and not leave her. when I leave it causes her no end of distress and is very upsetting for me.
    • CommentAuthormyrtle*
    • CommentTimeAug 22nd 2016 edited
     
    Rona, So much depends on our spouses' attention spans and what they are capable of understanding. I think it's good that Lisa sometimes thinks that you live there, too. You do not necessarily need to say that to her outright, but you could imply it by everything you do. For example, don't talk about "home" and also avoid all "leave-taking behaviors." For now, you might avoid making your entire visit a one-on-one interaction. Instead, you might blend in your visits (especially at the end of the visit) with an ongoing group activity of the place. If you could make your exit during an activity, it might not seem like such an abrupt departure. What you don't want is for her to develop a habit of objecting every time you leave.

    It is a sad fact that many times we have to manage things by outwitting our spouses. One of the things we have going for us is that we have functioning brains. So as upsetting as this is, keep using yours to help her to adjust to this new living situation. Of course, after you leave, you can go home and cry - we all do.
    • CommentAuthorJazzy
    • CommentTimeAug 22nd 2016
     
    Rona
    As I said it's been just about three years and I still have tears when I leave him there. He still wants to come home and gets so sad and upset but he needs to be there. I really want to bring him home because I still think I can do a better job of caring for him and I still feel bad that he is there and I still get so lonesome. I want things back the way they were. I want the us, but I know in my heart that I can't do the best job and know that it will be a short time, should I bring him home, that he will revert to the nasty demanding person he was then.
    I had to stop going so often both for him and for me. His Doctor told me " get a life. Give yourself permission to not come and to do something for you" he was right. It is still lonesome but I am starting to look for things for me to do. I am back knitting, mind you I just make tons of dish cloths, some times two an evening, but it is a start. Today I went out and bought all my fixing to make chilli sauce ( canning). It will taste so good this winter.
    Best to go and talk to the director of care right soon so you can maybe get things straight so you can relax. If she says your DH is doing fine once you leave, then will you be able to relax? Mine told me I had to back off so he would get used to them caring for him. I did that but it was hard.

    Take care

    Jazzy
    • CommentAuthorRona
    • CommentTimeOct 12th 2016
     
    Just an update, it has now been 3 months since placement and lisa is settling in well. Visits however I still find tough, exiting is easier she hasen't been getting upset but she still continually says she wants to come home doesn't want to stay there any longer, Does not understand why I don't stay with her. I find that very difficult. Jazzy you said it has been 3 years for you and you still have tears when you leave.

    I find many days I have tears when in leave. I know she is well cared for and she is where she needs to be, I think the tears are from just seeing what her life has become. What life has dealt her, and me! Friends are starting to head south for the winter or at least talking about the trips they are going to take. But as someone said have to stop thinking about what could have or should have been.

    So things are moving along now it is up to me to stay positive and to stay moving forward one step at a time.
    • CommentAuthorJazzy
    • CommentTimeOct 12th 2016
     
    Rona

    DH now tells me how great it is to live there, but still says he would like to come home. He, at one time, would tell me I needed to live there as I was sicker then him. Now he just keeps telling me how great it is. He has settled down quite a bit and now has decided that I don't need to know anything about his life there.
    It's sad to see what has happened to us and them but that is our lives now. I just don't have the interest in doing anything to better my life right now. Maybe in the spring. Right now I just read and rest because I never know what direction he will go next.
    Last night he called to say goodnight,only calls once a day now, and when I asked him what he was doing he said" working on the computer." I asked him what he was doing and he couldn't remember. He was sitting right in front of his computer as we talked. Advancing little by little.
    It will get better, but we will have changed. For the better? I don't know. I am more contented to just stay home and read or now cooking again. More careful of my finances, so I guess it is for the better.
    I have the yearly care conference on the 17th so I will find out more then.

    Hugs

    Jazzy
    • CommentAuthorRona
    • CommentTimeOct 12th 2016
     
    It has been a long time since Lisa could use the phone or the computer or even tv. I just have music on for her there really is not much she can do. Even the crafts and activities are mostly beyond her. She will tell me how the place. Is very nice but then say that there are a lot crazy people here, they want to hurt me. She just continually goes through the things in her room changing clothes all the time. I usually take the dog and we go out for a good walk. She still gets anxious and afraid.
    But in general doing ok. This morning not so good in bed when I got there at 10. They gave her an adavan at 5:30 so she must have been having a bit of a rough night. I just left and let her sleep will go back again tomorrow.

    For me jazzy I find I am content to be at home as well I am getting more comfortable with my own company.
    • CommentAuthorRona
    • CommentTimeFeb 10th 2017
     
    Haven't really posted for awhile but I do check in most days so thought I would give a quick update. Hard to believe we are within a few days of being 7 months in placement. I didn't move her to the gentle care wing as the change in meds have certainly helped her be more calm but she still says she is scared all the time. Everything scares her I think just because she cannot recognize or discern anything, Also complains about all the people they scare her will this ever change? There is one lady lives in a different pod but still they can wander, lisa says he doesn't like me he hits me. I have asked about this and yes they do not like each other, not like Lisa at all. The other week apparently Lisa was down in her area and hit her then the aides broke it up before the other lady could respond. She does not recognize that it is a lady and not a man. Oh boy but basicly she is doing well always happy to see me everytime wants to go on a holiday but when it is time for me to leave accepts it says I know you have to go.

    I am visiting about 4 days a week stay for around 2 hours. Also have hired two care workers who switch off spending 1-2 hours a day wirh her 5 days a week. One usually takes her to the thrift store the other just takes her out sometimes swimming which Lisa loves. The Staff also have her shade them giving her small jobs to do So I feel we are doing as well as we can.

    Me I think I am fine many goods days but still tears especially when I am confronted with the sutle changes. the other day got there and she was in pull ups needed for the night. This threw me for a loop know these changes will happen but still! As mentioned many times I am trying to move forward with my life. Even though I visit regularly have a schedule I try to keep but have decided my visits will work around my life instead of my life being controlled by being the caregiver. For example last week went skiing in whistler for a week have a couple of more ski trips planned. She did fine when I was gone and was happy to see me when I returned. Also have a wonderful new lady in my life. She is still working and is also the caregiver for her mother who still loves in her home, so the relationship is good for both of us. Brings joy to my life. What a mixture of emotions.
  7.  
    My spouse has been at nsg home 16 months. He is doing ok there. He never asks about home. He is beyond doing any crafts, tv is on but he doesn't pay much attention to it. He can't feed himself anymore. I vote sit everyday for an hour or two. Sometims run in to check on him.