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    • CommentAuthorLindylou*
    • CommentTimeDec 6th 2016
     
    Introduced myself to the fire men down the street. Figured if I was going to be inviting them into our house in times of emergency I would like them to know who we are first. When my partner fell twice over Thanksgiving weekend my son was there to help right her. But this weekend I was on my own when I had to pick her up. They were very sweet, and said they picked people up all the time.

    My son and DIL have both made me promise not to injure myself if I possibly could, and this last weekend proved that it is quite possible I can get hurt trying to get my partner standing by myself. So far, thank God, no injuries.

    The physician and nurse practitioner at PACE are sure that all her new changes, difficulty walking, total incontinence, difficulties eating, grabbing hold of things and people with tight grip, not comprehending much of anything spoken to her about her environment are all part of the progression of the disease. No UTI, vitals all good. She can, wonder of wonders, still talk feelings. When she fell the last time on Sunday, I got down on the floor with her and just cried and cried. She held me in her arms and said “there, there, everything will be all right.” I suggested we just stay on the floor and then neither of us would be able to fall down. She didn’t think that was a great idea, so with some tactical decisions on my part, we got her up okay. But afterwards I thought calling the fire department might have been the better idea.

    I’ve replayed all the recent falls, and there is not one I could have prevented unless I was continually by her side. She just walks and walks and walks, going from one piece of furniture to another. But just think of all the falls I have prevented by being by her side as much as I am. What a bazaar life.
    • CommentAuthorRona
    • CommentTimeDec 6th 2016
     
    I feel for you Lindylou I can only imagine. Lisa is still walking ok but I notice she is not as sure of herself she also continually walks. Trying to get her ready to go outside, putting on shoes and gloves has become a Real challenge.

    Christmas what to do? There is a Christmas dinner at her home tonight I will go to but Christmas Day???? We are now 5 months in and I have not brought her home don't think it is a good idea. The lady who has been with us for over the last year providing me with respite time and now spending time with Lisa on a fairly regular basis has become a good friend. She has invited us to have Christmas dinner at their place with her family. They are all nice and I think we will do that have a feeling this will be the last time. Will see how it goes eating is rather messy now but they are all aware.

    Hang in their lindylou you are doing a great job.
    • CommentAuthorWolf
    • CommentTimeDec 6th 2016
     
    Dianne fell too. I'm a lot bigger and didn't have a challenge lifting her. But I did feel in her mouth to make sure her teeth were all right a few times just like she was an animal or something. It got so unbelievably hard both physically and with BOTH the emotional and the mental toll. I kept her beyond where the pros where pushing me to put her in. I kept her beyond the lines in the sand I set. I had to. If she had been able to ask me to come home from the NH, I would have had no choice but to bring her home. I'm not strong enough to deny Dianne her own home even though I know that's crazy and knew it then. I can't do it.

    So I kept her until those threads were largely gone. "WHAT THE @#&@ ARE YOU DOING?????? YOU'RE COMING APART!!!" That's exactly one of the entries in my journal.

    But I knew I would hate myself if I didn't go until I did come apart. That day came when the lady in respite said no one would even take her in her present condition. I had weaned off all the drugs to give her a chance at a shred of clarity and they weren't helping anyway. That's when I crumpled to the floor wailing that I couldn't do this anymore.

    She never did come home from that respite. Instead I drove her from there straight to the nursing home. She looked around oblivious while I felt like I was taking my cat to the vet to be put down. A few months later they asked if they could restrain her in a wheelchair. Dianne just never stopped moving around and getting into things. I went to visit her and took her to a sunny spot and held her hand.

    And out it poured how sorry I was and how badly I felt. In the middle of that, Dianne, looking around detached, wheeled off down the hall and turned and wheeled into someone else's room. That was common. I sat there and watched her go what seemed like out of my life.

    I shouldn't have held on so long. She got better care overall and was safer there. It wasn't about that. I had to know that I left nothing on the table. I had to know that beyond. I don't regret that.
    • CommentAuthorRona
    • CommentTimeDec 7th 2016
     
    Well we changed the meds last week and what a huge difference. A very bitter sweet Christmas party at the home last night very well done started with singing, nog snd cookies then on to a very nice turkey dinner. Tuesday nights they have a fellow come in and play music he is very good everything from the stones to Frank Sinatra. Knows a lot of the residents by name really gets them going wonderful to see. Lisa was the hit of the party from the first song she was up dancing in the aisles, at the front of the room you name it. I got up a bit with her usually it was just her although Santa did join her for awhile. I found it so hard to watch there was the old Lisa just dancing smiling having fun. After it was over she got many accolades for her prowess on the dance floor. I came home and cried.
    • CommentAuthorLindylou*
    • CommentTimeDec 7th 2016
     
    I too am having trepidations about Christmas. Long before our Thanksgiving decline, I invited the family here for Christmas, thinking it would be better than my partner going some place unfamiliar. Now I'm wishing I hadn't - but the alternative would have been Christmas alone, just us, just another day, with a meal decked up a little maybe. We'll try it with the family, it will be the last Christmas we do, I'm sure. Just like our celebrating our 9th anniversary big time, knowing it would be impossible to do so on our 10th. I've figured out the logistics of carrying it off. My partner's temperament will be the issue. Well, not meaning to be cavalier, that's what anti anxiety pills are for.

    Glad the med changes are working for Lisa, Rona. Tears are not a bad thing. I'm crying on the inside a lot of the time. Because things are really sad. There is no other way to put it.
    • CommentAuthorJazzy
    • CommentTimeDec 8th 2016
     
    I'm crying on the outside. Last night Kevan informed me that I was taking him out Mao often and it was causing him stress. I only took him out when he asked and it was so stressful. He was difficult. He also informed me that that was his home not here with me and he feels better there, safer. I thought that I would have to be the one to stop the outings.
    Today the Ward Nurse is going to speak to the Doctor about possible changes to his meds. I guess Kevan had to realize on his own the effect his outing were having on him. He has been fighting to maintain himself for so long, maybe he is just tired of fighting.
    • CommentAuthorRona
    • CommentTimeDec 8th 2016
     
    Neurologist last week suggested that it might be a good thing for me to take a break on visiting, maybe visit less. Said Lisa still sees me as her scrutiny, her safe place and she needs to transfer that feeling to her new home. It is hard for me to accept but i think inevitable and for the best. Jazzy I think as hard as this is it is a good thing for both you and Kevin.
    • CommentAuthorJazzy
    • CommentTimeDec 8th 2016
     
    My mind know all of this but my heart doesn't.
    He always told me"I will never leave you" part of him is gone but part of him remains but elusive. I have encouraged him to Relly on the staff there but he has never allowed that. Now all of a sudden it's changed.
    This is the life of a dementia caregiver wether it is your spouse or Mom or Dad or sibling. It's painful.
    • CommentAuthorRona
    • CommentTimeDec 8th 2016
     
    So painful just returned from visiting and once again please stay, why do you have to go, I need you, I hate sitting here doing nothing. Not all the time but A lot of the time I feel beaten up by the time I leave then I just go back again for more. Sad state of affairs indeed.
    • CommentAuthorLindylou*
    • CommentTimeDec 10th 2016
     
    My heart is breaking. I cancelled holding Christmas here and told everyone that they would have to find another home to celebrate in,and my partner and I will not be able to come. And I was so sorry.

    Originally in early November when I said we would host I believed with one Atavan we could coast through it and have a good time, and it would be easier than trying to go some place unfamiliar. But life changes, one bitter change at a time, or as in the case recently, seven or more bitter changes almost simultaneously.

    At the end of our last dinner party Thursday, with guests who come every two weeks or so, everyone left crying. My guests so sad to see her hurting, my partner so overwhelmed in a universe that makes no sense to her, and me for the losses I was facing at that moment and in the future. After the guests left, she sat and leaned into me like she couldn't get close enough, like she was a two year old and all her hurts were just crushing her to pieces. We stayed that way for a long time.
    • CommentAuthorJazzy
    • CommentTimeDec 10th 2016
     
    Lindylou it is so hard! If you have read any of my posting this last week you will see that I have had to change all of my Christmas plans for DH and I about three times. It is just to much for him. He just can't handle anything outside his residence. I'm sure everyone will understand. There is a Christmas Tea at his LTC next Saturday and his Son and daughter and their families are coming and I don't know how he will handle it. It may be to much but he will have staff there and he can always go to his room if it gets overwhelming.
    We want so much for things to remain as they were but this disease just won't allow it. It controls our every moment.
    There are a number of us who will be alone this Christmas and we will be checking in here to keep company with those who understand our situation so feel free to join us if you wish.

    Hugs

    Jazzy
    • CommentAuthorLindylou*
    • CommentTimeDec 10th 2016
     
    Yes, Jazzy. I have been reading everyone's sorrow at this time of rejoicing. And my heart is going out to all. I may well come to the Christmas Lodge and the Beach House on Christmas day and visit with you all.
    • CommentAuthorJazzy
    • CommentTimeDec 10th 2016
     
    Good idea. There will be quite a few of us there. Don't forget to bring some goodies if you can.
    • CommentAuthorLindylou*
    • CommentTimeDec 10th 2016
     
    Actually did invite the fire department in today. My partner's grasping instinct took hold while she was coming out of the bathroom. She had hold of the shower curtain and when it gave as she tugged, she fell. Nice guys, they helped her to the reclining chair. But they did tell me that if she fell again within 24 hours they would bring her to the hospital in spite of the MOLST form on our refrigerator. I don't want her to go unless something breaks which I hope and pray does not happen. Now I feel compelled to be by her side continuously. Have I told you she walks continuously unless she is exhausted? Long weekend ahead.

    On the bright side, her son is coming tomorrow afternoon to lower the bed by taking away the hollywood bed frame. Now the bed will rest on the floor. And at least I won't be struggling to get her into bed. Helping her up may become a challenge. A year ago my brother took the casters of the bed and that worked until now. He has had a stroke mean time, and while he is doing well I can no longer ask him for help. I was a bit surprised that son answered text and agreed to come. But he did. He is also going to cut a branch off my dogwood tree which will block the sidewalk if there is any snow or ice on it.
  1.  
    Lindylou, here in my town, we were told that on the third call, the fire department is required to send a report to the Dept. of Family Services. They, in turn, are required to do an on-site check for abuse.

    Mary!!