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    • CommentAuthorRona
    • CommentTimeJul 25th 2017
     
    Reading these posts the tears started to flow I have always been an emotional person but makes me realize that even through I feel I am doing fine it is right below the surface. I so relate to all of the above comments and can empathize with all of you, I am right there with you. Lisa turned 61 in April and has been in care for just over a year, July 14 2015.

    Anorthendboy in the beginning I went everyday and was told the same thing need to come less so she can adjust and too hard on me so need to take care of myself. now I try and go like you around 4 times a week. However I work that around my schedule more now rather than hers. In other words if there is something in my life going on I will visit around that rather than having my life always revolve around visiting her.

    Like all of you The changes lately I have found difficult they just kind of happen and it becomes the new norm. A stage where more physical issues are evolving Incontinence, the ability to feed herself, instability, she can still walk in fact that is what she does all day but much more unsteady.

    Right now I am trying to decide should I go and see her today, I have been there the last two days not much on my plate today but I am tired. She still recognizes me and is always happy to see me but the recognition is more a feeling of comfort rather than really knowing who I am. I have also decided I am going to do everything I can to make her as comfortable as I can, we are lucky that we can do this. I have a wonderful lady who sees her an hour in the morning and in the evening and another one that goes a couple of times a week. Gives me another level of comfort knowing that if I am not there someone else is watching over her.

    Even though we are all at about the same stage of our journey everyone's journey is different. Sass you still have a young family to worry about, lindylou you have taken on the courageous path of carrying on this journey at home, Sass you still work full time, you see we all have differences but we are all in this together and are feeling the same emotions. I feel very fortunate I have been able to develop a life outside of the Alzheimers world this has helped me to cope. I am no longer living it 24/7 I now jump in and out of that world. It is not forgotten, it will never just go away, rather it has helped form who we are today. In the very beginning, just after diagnosis we had this discussion, in fact we had it many times, she was adamant, that when the time came for her to be in care, I was to start life again, this has given me strength to do just that, knowing truely that this is what she wanted. A wonderful woman, if you love someone you have to love them enough to be able to let them go. She did that for me. The tears are still flowing as I write this.
  1.  
    Rona, I don't think there will ever come a time when the tears aren't just below the surface. Even though we learn to go on without the one who is the other half of us, and learn to build a life, there is a part of us that will never quite heal. My social worker likened it to someone who, although he/she recovers from a heart attack, and goes on to live a long life, there will always be some scar tissue left around the heart. I feel like I'm operating with one leg, one arm, and half my heart missing. Like you, as I'm typing this, the tears are there.
    • CommentAuthorFiona68
    • CommentTimeJul 26th 2017
     
    I too am struggling with how often to visit my husband, who has been in a Memory facility for 4 years. For almost all of this time, I've gone almost every day, but now I feel depression setting in and this constant weight of grief, loss, sadness, and depression has made me too want to just hide in my house. I've come to the realization that he does not often know who I am and is content in his little world there. That's given me permission to visit less often. So now I go about 4-5 times a week. I don't feel guilty when I'm not there but I miss him so much that the only time I feel the weight lifted off of my heart is when I'm out of town. So, I go to visit my kids a few times a year ... and try not to drink too much at night ... and rely on sleeping pills to let me sleep at night.
  2.  
    Fiona68 We're no doubt facing the greatest struggle imaginable, and I feel what you're feeling. It's said, and I believe it's true, that the caregivers/loved ones are more at risk, and are dealing with much more heartache, etc, than are the ones with the disease. That's why it is absolutely essential that we recognize/believe that, and learn to not only look after ourselves, but also go on to build a life. We have much more inner strength than we give ourselves credit for, and it is this strength that allows us to go on and not just exist, but live. Give yourself permission to do whatever you need to do in order to accomplish that. Lastly, remember - you're not alone.
  3.  
    Really rough day after visit with my Sylvia. She's taken a further downturn; recognition of me fades in and out; she shouts in anger a great deal; very upsetting to see. Not sure how to go on from here, in terms of visiting and trying to relate to Sylvia. I know that what's manifesting is the disease, and that the incredible loving woman I remember is still in there somewhere, but the hurt and heartbreak is overwhelming.
    • CommentAuthorRona
    • CommentTimeJul 28th 2017
     
    I hear you so hard to keep going and watch the decline But I find it easier now than in the beginning when I use to go and she would be yelling pounding on the windows, following me when I tried to leave calling me all sorts of names. Now when I have to go I tell her I will be back soon and for the most part it is fine she is easily distracted.
  4.  
    Rona, You're right about it being easier to leave now. I used to have the same difficulties early on when it came time to leave. Sylvia would try to follow and beg me to take her with me. Now she's just unaware, and it's almost like it doesn't matter if I'm there or not. In it's own way, the unawareness is just as gut-wrenching.
    • CommentAuthorSass
    • CommentTimeJul 28th 2017
     
    I agree with you Rona and anorthendboy about how leaving now is easier, mostly because he is unaware most of the time. In the beginning, it was awful because he hated me for putting him there. He didn't think he needed to be there and thought he could do everything on his own. He no longer could understand how much he was actually forgetting and also how angry and agitated he was, scaring our son and making him not even want to come home. So, there I am, in a no win situation, making the decision to place him. in the beginning, visits were awful, because the second he saw my face, my husband would get this angry look on his face as he looked at me as the one who put him there. My husband was very non-verbal by the time he was placed so he didn't have ability to verbalize what he was thinking and feeling, he could only emote. And emote, he did, for many months. It's been a tough road and it's disheartening and sad when I go now because he doesn't seem to remember me any more.

    Fiona68, I used to drink more than I do now. I was getting really depressed so I went to the doctor. I'm on antidepressants to help. I just went to the Dr the other day and was placed on a second one because I still was finding it hard to just get up and face the day. That's kind of necessary when you still work full-time. I also just never wanted to do anything including things that I used to find enjoyable. Fiona68, I like to hide in my house too! But I know it's not good for me to hide out here all the time. I'm hoping this new medicine will help me get out of this funk i'm in so I can attempt to get a life outside of alzheimer's.

    Round of hugs to all of you...
  5.  
    Sass, Thanks for the hug; appreciated and needed!
  6.  
    My Sylvia is now in a wheelchair, but after getting over the initial shock and sadness, I realize it's the best thing for her. Obviously it almost totally eliminates the risk of falling, but also, she has adapted to it quite well. It now allows her to better participate in activities/exercises, so for that, along with her still recognizing me, I'm grateful.
    • CommentAuthorRodstar43
    • CommentTimeSep 2nd 2017
     
    What stage would guess she is in? Using the 7 stage method. I think my wife is in five. She still thinks it is just a little memory problem. She is very dependant on me. I have my own chronic pain problem. Makes it hard to be the 24/7 caregiver.
    • CommentAuthorNicky
    • CommentTimeOct 26th 2017
     
    From the comments I've read, I realize I should probably be posting here, since my husband is in residence. True, I'm no longer in the thick of things, so all I can do is remember how difficult it was & sympathize with the ones who are still dealing with the day to day responsibilities & maybe offer some ideas on how I handled certain situations?

    I'd like to know from the ones who have placed their spouse, how well they coped with that decision. My husband declined very quickly after he had pneumonia in January. My family was very concerned about my health because I was getting sick. They had been telling me for months he needed to be placed in a private facility. He is on a waiting list for the public long-term care which is subsidized, but it can be a long wait. I wasn't ready to place him & also I felt I couldn't really afford the private, so we got a financial advisor to look over our finances & he said if I was careful with my expenses, I could manage the private - of course the subsidized public would be better financially. About a month before I placed him, our social worker arranged respite for me - we placed him in a facility for 3 days & nights. He did fairly well there & after he returned home I decided to look into placing him in a private residence. The one I chose is close to our home & only had one room available on the locked memory care floor at that time & I knew I had to decide quickly because she was showing the room to others - I would have been on another waiting list had I not taken it. It was the most difficult decision I've made - I felt I was discarding him..... that I hadn't done enough for him. But, I realize it was the best decision I could have made. I cried everywhere for the first 2 weeks - I've never been comfortable crying in public, but I couldn't stop it. I cried at the residence when I visited him, cried while driving, couldn't get out of the car in the parking at the mall because I was crying & then cried again while I was shopping & of course cried at home. Then there were other issues once he was in residence, but I'll keep that for another time.
    • CommentAuthorRona
    • CommentTimeOct 26th 2017
     
    Nicky I can relate but what we feel is guilt and guilt is a useless emotion. I too was being told for quite a while it was time to place but so very hard to do. One of the best pieces of advice I read on this site was your loved one is never ready to be placed it is when the caregiver is ready. For me I knew I was ready I just could not deal with it anymore, it wasen't so much the physical work but more the mental anguish. I was an emotional wreck. I tried, daycare, I tried respite, but everytime it was a battle to get her to go then when in daycare I would just come home and sit exhausted, then pick her up and she would be all over me again it just was not worth it. She was on the list to be placed for I think 7-8 months I felt if I put her on the list that helped me to keep going knowing there eventually would be a change. Finally I arranged a respite stay for a week during that week I went to my worker and told her I just could not do it anymore I could not bring her home. I got a call later that week that she was placed.

    I would visit everyday and those visits were not easy. Guilt you bet but after years of being the caregiver I knew that if something didn't change I was going to go down. It was just me no family close just me. So we are coming up to 16 months now she is doing ok some good days and some not so good days. I visit about every 2nd day but it is now around my schedule, Our visits are good but I still find them hard, hard to watch the continual decline. I have developed a life outside of Alzheimer's and it is good. I will be with her until the end but am continuing with my life that is what she wanted for me and that is what I am doing. What else can we do life should go on.

    I know I did all I could and will continue to be with her for support and love and will continue to be her advocate, doesn't matter how good a facility is things do fall through the cracks. So Nicky, like me you know you have done everything you could for him, I know others will have told you that, now we both have to make sure we keep that quilt at bay, locked up somewhere and go on with our lifes.
  7.  
    Nicky, dear, placing is so, so hard. I cried like you - everywhere. Sometimes it just happened, I didn't know I was going to cry, and then I had to deal with the embarrassment as well. My husband has passed and there were many bad times, but placing him tore me apart the most. You aren't alone in knowing it was the right thing to do, yet feeling like a horrid person for doing it.

    Every time I went to visit I had to put on a happy face, not only for my husband but for the other residents too. They don't do well with emotion and sadness. Along the way of plastering this happy face on, I began to feel better. Not normal. Not happy. But not crying so much. I think I actually went 18 months and the only time I cried was on our wedding anniversary as I was leaving the unit. I mentioned it to the nurse letting me out of the locked door and then burst into tears. She held me until it subsided.

    Maybe it is Stockholm Syndrome. Maybe it is acclimation. Maybe your body just runs out of tears, but it does get some better.
    • CommentAuthorAmber
    • CommentTimeOct 28th 2017
     
    A funny story about my hubby.

    He's been in a nursing home for four years now. Physically he's still strong as an oz but mentally he's declining. He also walks constantly around the facility.

    I was in visiting him last week and was tiding up his room and putting his pictures back on his walls. He had been evacuated with the wild fires. I guess I was bugging him cause he said to me let's go. I figured we were going to walk around the facility but instead he walked me to the front door and opened it and said it was time for me to go!

    He put the run on me!!!
    • CommentAuthorRodstar43
    • CommentTimeOct 29th 2017
     
    Amber, when put the run on you was he laughing, serious, or mad???
    • CommentAuthorWolf
    • CommentTimeOct 29th 2017
     
    Nicky, you don't have to talk about nursing homes here. That's not the idea of this thread and I know that because I created it.

    Rona, that's how it happened for me. I put Dianne in respite and when it was time to take her back I said I couldn't do it anymore. Within a week she was placed.

    That was almost six years ago (wow) and she passed away after being in there for just over three years. I"m still months from three years after she passed and there isn't either a shred of guilt left, nor any interest in what used to be a subject.

    I went through more pain and misery for her in this disease than any other thing in my life and that's enough validation for me.

    I went to the meeting we had at the respite home to sign papers and talk about crisis placement. Then I got into my car and cried like a little baby for a very long time before I was able to drive.

    Somewhat like Amber's husband, my wife didn't know where she was or what was happening. She couldn't communicate in any meaningful way. If she could have, it would have been much harder on me to place her into professional care.

    There are no right or wrong answers about this topic.
    • CommentAuthorNicky
    • CommentTimeOct 31st 2017
     
    Wolf, I was reading past comments & noticed you're from Canada. I'm also in Canada - just wondering where in Canada are you located?
    • CommentAuthorWolf
    • CommentTimeOct 31st 2017 edited
     
    I'm in Kitchener-Waterloo Nicky. I saw you're in the Gatineau after living in Timmins. I've never been to Timmins but I've been to Ottawa and the Gatineau area a number of times. That's where I learned about beavertails.

    edit - btw, I meant you can talk about residency issues in more places than this one thread.
    • CommentAuthorNicky
    • CommentTimeOct 31st 2017
     
    Wolf, you're in the same area as my son - he lives in Guelph. Both my son & daughter graduated from the University of Guelph. My son stayed in the area & my daughter joined her boyfriend, now her husband, in Ottawa where he attended university. They settled in Gatineau since the housing is more affordable & both work in Ottawa.

    I know I'm off topic, sorry everybody......
    • CommentAuthorAmber
    • CommentTimeNov 1st 2017
     
    Rodstar - I think he had just had enough of me fussing with him and his stuff!

    Nicky - Canadian here too BC in the Cariboo in winter and on the coast sailing during the summer months. I have a new partner but will never stop looking after my hubby. He comes first. Just to let you know there is life after this horrible disease.
    • CommentAuthorNicky
    • CommentTimeNov 18th 2017
     
    A few days ago & I received a call from my social worker telling me there was a bed available for my husband in a long-term care facility - it was very quick - a call one day & he's in there the next. He's been there 3 days now. OMG - I was not expecting such a flood of emotions..... I knew this was coming, thought I was ready...... here I go again back to those ever consuming emotions.....I'm finding this so difficult because I know this is the last stop..... I feel I'm starting over again - just when I had managed to start feeling a bit better a few weeks ago. I'm finding it almost unbearable realizing he needs to be in LTC at 67 yrs, while seeing the majority of the people there that are 10 to 20 years older than him. Of course, we all know how depressing & sad a nursing home is..... certainly not a mood lifter. I just want to get off this damn emotional roller coaster ride - who in the hell bought me this ticket anyway....

    Yesterday, I went to my favourite exercise class with great music & lots of energy, the 1st one I've been to since he's been in LTC & I almost left halfway through the class because I came to tears 4 times - I thought of him constantly, just couldn't get him out of my head - kept seeing him sitting there in his room looking so sad & alone..... I feel I'm regressing..... I just joined the gym a few weeks ago & I didn't experience this - the classes made me feel good.... I will keep on going because I'm sure I'll enjoy the classes again.

    I actually feel bad sharing my emotions, when I know lots of you are still in the trenches caring for your spouse at home.... I realize I'm getting a break from that life style of full time caregiver - and I know full time caregiving is more difficult than what I'm experiencing, well perhaps I should say it's a different set of emotions. Thanks for allowing me to vent.
    • CommentAuthorWolf
    • CommentTimeNov 18th 2017
     
    I remember all these things Nicky. My wife was much younger than most of the people in her locked up ward. It was awful in every way although the place was nice and the staff really did try.

    Then we're doing something normal and yet nothing is because these massive things are going on. I don't think it's fair to say that placing means you're getting a break. I think it's just a different variant of the anguish. We're not being tested - they have a disease which increasingly deteriorates.

    These are very tough things to go through.
    • CommentAuthorbobbie
    • CommentTimeNov 18th 2017
     
    so glad I found this. It was kinda silent for awhile. My husband has been in care center for about 3 years. It is close and I can go once or twice a day. He is unable to walk or take care of himself. His short term memory is gone, but we can still visit about the past. He know people--or most of them. He doesn't realize that he can't do
    things, I read the name of it once, but only remember it started with on o,

    He tells me if I would only bring home, he could everything for hinself and help me. After 3 years, it is hard not to believe him. The tears and guilt come at
    such unexpected times.

    As Wolf says, these are tough times/things to go thru. I never thought it would happen to "us".
    • CommentAuthorRona
    • CommentTimeNov 18th 2017
     
    Ditto to all the above. Lisa has been in care now for over 16 months and as wolf says it is a different variant of anguish. The beginning was very tough I was there everyday and use to think why do I put myself through this everyday the same she knew enough to be angry with me so when I visited I would get verbally attacked by her but then I would go back the next day and do it again. As things progressed no anger now just greats me with I love you and you are a nice man still says she should go home but really does not know who I am or what home is or means. I visit now 3-4 times a week the visits are usually pleasant enough and just get one of the workers to distract her while I leave. So not as hard but still have the feelings of quilt, why her, why has she been condemned to this life while mine goes on. Hard to watch the decline but Nicky it will get easier. It is ok to feel the emotions you do, it is ok to cry, those feelings and emotions need to get out. Hang in there.
    • CommentAuthorAmber
    • CommentTimeNov 20th 2017
     
    Nicky - on to the next set of raw emotional upheaval. This is where we get the name of "Married Widow". They are there but we are on our own even more with them not being home physically. The first few months will be really tough but after a while you find a rythmn that works for you.

    There's not right way or wrong way dealing with this next phase but it is now important for you to spend time looking after you and getting your health - mentally, emotionally and physically better now that you're no longer being the 24/7 caregiver. It's OK to be selfish and Look after yourself. Don't give this disease another victim.