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    • CommentAuthorNorthstar
    • CommentTimeJan 4th 2008
     
    Well I went and saw the room today, cried the whole hr on the way there, and back. But on the upside I was very impressed with the facility, fairly new, lifts in both the bedroom and bathroom. Private bath in his own room. Nice view of a garden out his very large window, cable vision in his room . I will bring in his power lift chair, own tv, mini fridge and bird feeder. Our son will take everything in ahead of time and they when JR and I get there the room will be "like home" for him. I truly think he is going to miss the dog more than he will actually miss us. We will try to go every night and share suppoer with him, and we can bring the dog with us as long as he is on a leash. I am still able to take him out for a few hrs if he is up to it and I can also assist him with any of his daily care if I want. They appear to have very good care aids employed there. There are 14 residents in his unit. They have many activities for them if they are so inclined.
    I need to quit crying and enjoy the last couple of days with him home. I know I will be ok and I know this will be better for him in the long run, just gonna be a rough couple of months for us to adjust to this new lifestyle. I am glad that I have always been independant, I think that will save me. I will also go get my horse and bring it to the barn so I have an outlet for my energy this spring.
    Take Care all.
    kathy
    • CommentAuthorkay kay
    • CommentTimeJan 4th 2008
     
    Kathy,
    I am sending you lots and lots of hugs as I know this will be very tough for you. I had to make the same decision for my husband about 8 months ago. I still cry sometimes and I get lonely, especially in the evenings, but, I know that I had no choice, I could no longer care for him like he needed to be cared for. I see him everyday and have gotten to know the Staff at the Facility. He is doing very well at the NH.

    I quit work 3 years ago to care for my husband 24/7, but, now I felt I needed some type of outlet, instead of just sitting at home in the evenings. I started to work in Events in our Arena/Auditorium where we live. This gets me out of the house, but, yet I am still able to see my DH everyday.

    My prayers are with you. Know that you will cry and feel very alone, but, you will get through this. It is just another part of this unfortunate journey we must take.
    Take Care
    Kay Kay
    • CommentAuthorNorthstar
    • CommentTimeJan 4th 2008
     
    Thank you for your comments Kay, it gives me strength to know I am not alone on this step in the journey. I will also go see him every day, but it will have to be in the evening as I work full time. it is also a one hr drive each way, but thankfully I have a good car and am able to make the drive.
    How long did it take your husband to adjust to his new surroundings, I am so worried that he will be angry with me and unhappy, I just could not bear it if he were unhappy. he has always tried our entire married life to ensure I was happy.
    Kathy
    • CommentAuthorpat
    • CommentTimeJan 5th 2008 edited
     
    Twice I wrote long note and twice I lost it . I can only imagine what you have and will go thru. We are not there yet. But know that our thoughts and prayers are with you. And know that you will not walk alone on this journey. Please remember to stay positive. It sounds like you chose the best of LTC facilities for your LO, and will continue to watch for the best for him. So glad your son is with you thru this. Lots of hugs. You deserve them by the bunches.
    PAT
    • CommentAuthorcarewife
    • CommentTimeJan 5th 2008
     
    This is a heartrending decision. I had to place my DH in a NH 5 years ago and I still have moments of agony wanting him home with me. thankfully I have also good friends who remind me that I can't possibly care for him and that he views the home where he has been for four years as his home now.

    You have done the most loving and self sacrificial letting go for your beloved's ultimate good and you can rest assured you have done your utmost . You are still his main advocate to make sure he is treated with compassion, respect and dignity. this responsibility will not cease only change to a different setting. As you become familiar with the nursing home environment you will be able to intervene and/or make sure your husband is being cared for as you approve. I feel that I can still help my husband by being his vigilant advocate in areas where he can no longer help himself.

    You will probably find that now you can have quality time with your husband as you visit because you will be more rested, and no longer have to be responsible for care of him physically. Know that you have support from your friends here. If I can help in helping you as you adjust to this juncture of your Alzheimer journey please ask and I will be glad to offer my assistance.
    • CommentAuthorjoyce43*
    • CommentTimeJan 5th 2008
     
    My prayers are with you Kathy. We haven't reached that point yet and I pray we don't. I will continue caring for Bill as long as I can, but when it gets to the point where I can't give him what he needs, I will again pray for the strength to admit it.

    It sounds like a good place and he will get all the care he needs and deserves.
    • CommentAuthorNorthstar
    • CommentTimeJan 5th 2008
     
    Thank you to all of you for your support, it helps me knowing others have done this before me and survived! both them and the spouse. I just sit looking at him wondering if when he needs to go to the washroom or change channels on the TV is someone will help him, I am just so worried about him being frustrated. I know I will feel much better in a month when I see he is adjusting. Just this morning he wanted to go for coffee again, so up we got, he lost his balance fell down while I was holding him, we both ended up on the floor , my arm is all bruised from hitting the wall, he was upset that I "let" him fall, I was crying because I knew just how exhausting it was going to be to try and get him up again. We finally got to the door and out to the car, this took about 15 minutes to go 10 feet. Got to A&W and he has forgotten how to sit, such a chore to get a chair pulled out and him settled onto it. Finally got our coffee and then he had a hard time finding words to say to people, it is just so sad, this emotional roller coaster. I know he needs to be there but worry soooo much about him. I am going to be lost without him here with me, I am just beside myself with sadness.
    Kathy
  1.  
    Kathy, my thoughts will be with you and your husband tomorrow. I know you have prepared for the day and will make it all work. I am not far behind you in placing my husband when I can not do it anymore. When you said you both fell that is my worry, so far it is just him. I also totally understand the "15 mins to go 10 ft". Take care and know we are all with you.
    barbarakay
    • CommentAuthorNorthstar
    • CommentTimeJan 5th 2008
     
    Thanks for your kind words Barbarakay, I was busy today, marking all his clothing. Then tonight I did up two very large picture frames, I arranged pictures from the first time we met to current, wrote on each of them so it is like a story board of our lives. Oh that was so hard and yet I am sure very healing. It was strange looking at a picture of him just 4 yrs ago. I had not realized how different he looked. Anyway many more tears later I feel good about the pictures. One of the other things I have been told to do is an actual board that talks about the person, with information on likes dislikes etc. They say this will help the staff when we are not there to advocate for them. Take CAre and thanks again for your concern.
    Kathy
  2.  
    Kathy, my heart goes out to you. This must be one of the most difficult times for you. Our thoughts and prayers are with you.

    Jan
    • CommentAuthorAmber
    • CommentTimeJan 6th 2008
     
    <<<<<<<<Kathy>>>>>>

    The picture and story board is a great idea. I know with working in the care field that when ever we had a client go into the hospital we would always place a picture of the person and a discription of their likes and dislikes by their bed. Also when there is relief staff it is very helpful to them to have the board with who he is and what his career was along with his likes and dislikes. Sometimes you are so busy you don't have alot of time to train the relief on every little thing or you can tell them but there is so much information they just can't retain it all. Pictures of who they were before this disease took them is also great because it reminds us who the person really is and you don't see them as they are now.
    • CommentAuthorcatbird
    • CommentTimeJan 6th 2008
     
    Kathy, I can only offer you my small experience of taking my husband to the VA home for a week of "respite". They call it that but actually the respite is for me. I labeled and packed 7 days' worth of clothes and all the other small things you must do. We had driven up to see the place 10 days beforehand and walked all around. But of course he didn't remember it. I told him that "the dr. said" it would be good for him to get away for a little rest and that our two older boys would come and see him. This particular VA hospital is a former TB sanitarium, so it is located in a very rural area in wine country. There are wild turkeys and deer you can see from the windows. Looks like a college campus.

    Anyway, after we arrived and I set up his room and labeled the drawers, the bathroom, etc., I stayed for lunch. Then I left and cried all the way home. I kept telling myself -- "just for a week, just for a week, just for a week." The one rule they have is that the spouse cannot visit but others can.

    So I guess what I'm trying to say is maybe you can say " This is for today and I will see him tomorrow." And then of course you'll have to repeat it every day, and know that you will see him.

    I can only imagine the sadness and heartbreak, but please know that this is the kindest thing for you to do. Sometimes doing the "right" thing feels wrong even though it isn't. I will be thinking of you tomorrow and Tuesday.
    • CommentAuthorNorthstar
    • CommentTimeJan 6th 2008
     
    you know I really appreciate all of you, I am so thankful for many things, finding this web site is certainly one of them. I am also thankful that I live in a country that has very good care homes for people with AD and that your financial situation has little to do with your loved ones ability to be there. I am thankful for wonderful children who are doing everything they can to support me, even tho this move is going to be very hard on them also, they are also losing their dad. And they were so lucky because he was/is a great father to them. We always used to joke when we were young and first married that I was his pension plan because I ma 12 yrs younger, little did we know that it would turn out that way and that AD would come to visit and rob us of so much time. I am so thankful that in the last 10 yrs after our daughter left home we rediscovered each other and truly enjoyed being together. I know this is not the end, but it will be such a huge change, They reccomend not going to visit for the first few days, but I don't think I can do that. Our son said he is going to wait a few days and let him adjust , but he is so used to having me or the homemakers looking out for him 24 hrs a day I am sure he will be just lost in that room alone. Thanks for the encouragement on the story board Amber, I really want people to see him as the man he was not the person that AD has made him.
    Kathy
    • CommentAuthordarlene
    • CommentTimeJan 6th 2008
     
    Kathy, It is hard, but for the best. Please remember how hard it is to take care of him 24/7. I want to go get Ralph everyday. He is so confused and the adjustment has not been easy this last week. He is getting such good care and I know I did the right thing.
    Darlene
    • CommentAuthorNorthstar
    • CommentTimeJan 6th 2008
     
    I think of you alot Darlene, and wonder how the transition is going. Do you manage to go see him every day? I don't think I can, we live in the north, so winter driving right now. and the home he is going in is 75 minute drive away. Our children will each go in a couple of times a week as well. I am just so worn out that I think that is part of the reason all I do is cry, I am sure it will get better once i get proper rest, exercise and out of the house. I have not left his side for more that an hour in the last 3 weeks, I am worn out.
    Kathy
    • CommentAuthordarlene
    • CommentTimeJan 7th 2008
     
    Kathy, we are having some problems now. He did pretty good the first couple of weeks. He does fair during the day, but night is a different story. He is angry, stressed and will not sleep. He tries to wander during the night. We are in the process of trying to adjust his meds to correct the problem. Have a call into his psychatrist now and waiting for her to call. The staff is very good with him, but he will not cooperate. Just can't figure out why he is there. I think his reaction is not unusual, so just trying to hang in there. I know I cannot bring him home and they told me he needed to be at the home. They are wonderful, but I do feel guilty that he is giving so much trouble. It is tough, but need to be patient. I will be glad when it feels like home to him.
    I have been going to see him every other day. I have not been to see him since Thursday as he gets worse after I leave. I live in a small mountain town 20 miles from the city where he is located, so weather is a factor. Was hoping to go to day, but there is snow in the forcast this afternoon
    Even with the problems, I am getting the rest I need and that has helped dealing with the situation, and that is what you need. It will help with the crying. Every person reacts differently, so I pray your dh adjust easily, but if not be patient. They have the experience to deal with problems and you need to do this.
    Darlene
    • CommentAuthorNorthstar
    • CommentTimeJan 7th 2008
     
    Oh Darlene I am so sorry to hear that things are not going so well, I hope for both of you that he settles in again. Does he take sleeping pills at night? Do not worry about him giving them trouble, they have the training to deal with it :) Can you just call to check on him so you do not need to go out on the roads? I am glad you are getting some rest, as I said this is so much harder when we don't get the rest we need.
    I keep questioning myself today if I am making the right decison, I know I am but in some ways it would be so much easier for me to just keep him home, I just dread seeing his unhappy face tomorrow. I pray that he will accept the change easy. I am hoping that by having his chair and pictures he will adjust more quickly.
    kathy
  3.  
    Kathy, I have been thinking about you today. My thoughts will be with you through this night and tomorrow. I know that when our turn comes, you will be able to give us strength to do the right thing too.

    Jan
    • CommentAuthordarlene
    • CommentTimeJan 7th 2008
     
    Kathy, I too am thinking about you. You are doing the right thing. You need some support. Do you have someone going with you tomorrow? Having someone with you does help. My daughter was with me and will be here for another week. It is hard and there are adjustments for both of you. But you will get some rest and you will have quality time with him. I am feeling much better and thinking clearer.
    I saw Ralph today and he is doing better. He still is not sleeping at night, but has calmed down some from the anger and stress. I did not hear from the doctor yet, but will call again in the morning. He does need a stronger sleeping aid. I do call the days I cannot go to see him. They are always glad to talk to me. I have been told it takes a month to three months for them to adjust. It is frustrating, and hard, so come here and let us know how it goes.
    Darlene
    • CommentAuthorNorthstar
    • CommentTimeJan 8th 2008
     
    Hello Darlene
    Yes our children will go in ahead of us and set up his room, I will drive him in our car, I think I will stay longer than the kids will. Thank your for your words of encouragement.
    I am glad you are getting the rest you need,and that Ralph is doing better. That always makes us feel better when they are not in distress.
    I think I will take the rest of the week off work. then back on Monday.
    take care
    Kathy
    • CommentAuthorpat
    • CommentTimeJan 8th 2008
     
    Kathy, My thoughts and prayers are with you, your LO and your children today and hope everything will go smooth for you all.
    PAT
  4.  
    Kathy, sending good thoughts your way....I know from experience how hard this move is. But you know you are doing the very best thing. (Try telling your heart that, right?)
    Take some time and relax....you will be surprised how exhausted you are...hugs, dear lady....
    • CommentAuthorAdmin
    • CommentTimeJan 8th 2008
     
    Kathy,

    I do not yet have experience in what you are going through, but I can offer you kind thoughts and emotional support. Once he is settled in, it will be time for you to catch up on much needed sleep. Please let us know how things are going.

    joang
    • CommentAuthorJane*
    • CommentTimeJan 8th 2008
     
    Kathy,
    I am so much thinking of you this evening. I do not know how you hurt right now because I have not yet entered that time in our journey, I only know that it has to be a hurt beyond all hurt. Just remember, you are still his caregiver, just
    as carewife has said, you will only be careing for him in a different location and be much more rested yourself. He would want that for you. Put yourself in his place and I am sure you would want him to do the same thing, you have to take care of you in order to take care of your DH

    Jane
    • CommentAuthorJane*
    • CommentTimeJan 8th 2008
     
    Carewife,
    You mentioned that your DH has been in NH for 5 years. Forgive me if you have posted answer to this question before but I have not read it or if I have do not remember. There are so many people on this site, I sometimes get confused unless I stay focused on one or two. I would like to ask you how long has your DH had Alzheimer before being placed? What caused you to place him, and what stage is he now in? 5 years seems such a long time for one to be in NH and that is what I dread so much, the length of time my Jim might have to be there.

    I have read where many Alzheimer patients end up in a NH for over 7 years. It is a very frightening thing to think about.
    Please share if you will.

    Jane
    •  
      CommentAuthorNew Realm*
    • CommentTimeJan 8th 2008
     
    Kathy,

    Many armloads of big warm hugs and warm thoughts coming your way.

    {{{HUGS}}},

    Diana
    • CommentAuthorcarewife
    • CommentTimeJan 8th 2008
     
    Jane, my husband was diagnosed with d ementia of the alzheimer's kind in Jan. 2000 however I had noted in a journal I kept that he was having much difficulty with memory in the fall of 1996 . From then on, we were both in denial with me compensating for him when in public. In 2000 I also was diagnosed with Parkinson"s. I took care of him until summer of 2003 when my grown children and physician urged me to place him as he was incontinent, belligerent behavior, and refused to cooperate in day care. MY disease was debilitating , if he fell, I might not be able to get him up etc. He was in a total of 3 nursing homes and now i s in our local VA facility, dementia wing. The staff takes very good care of him only the home is 45 miles from my home so is rather far to visit often. He can't communcate verbally, is in a wheel chair but can still walk for short periods of time before fatigued. HE can eat and swallow well still so is on a regular diet. He knows me (I am familiar to him). doesn't know his children most of the time, I think he understands and is aware of his surroundings more than he can communicate to us.My dear sweetheart was in excellent physical condition so he will not "go gently into that good night". He quite often does not know me although I am strangely familiar but it is very painful to not be recognized as his wife of 57 yrs. We were best friends since we were 16 and 15. Yes, almost 5 yrs. in a NH is agonizing and almost unbearable but we keep going praying that God sustains and keeps us both.
    • CommentAuthorJane*
    • CommentTimeJan 8th 2008
     
    Carewife,
    Your situation is much like mine in that my Jim was diagnosed in 2000, Jim still knows me but not what our relationship is, he does not know our children only that they are familiar. We have been together since I was 17 and he 18. Married almost 50 years.
    Carewife, my Jim also is very physically fit, how horrible it is to wish there was a physical condition that could gently take them home but that is what I wish for.

    You were only able to take care of your sweetheart at home for less than three years, I have been blessed in that I have taken care of Jim for now in our 8th year here at home. I am praying that I will be able to do this until the end. There is so much I am trying to learn in order to be prepared and this site is helping me.

    Do the Doctors give you any indication how advanced into this disease they feel your husband is?? I would say with the no communication he is advanced wouldn't you??

    Jane
    • CommentAuthorJane*
    • CommentTimeJan 8th 2008
     
    Kathy,
    How are you today??? How did JR do with the move?

    I hope you are doing ok.

    Jane
    • CommentAuthorNorthstar
    • CommentTimeJan 8th 2008
     
    Thank you so much to all of you for your words of encouragement and kindness, it so helps to know we are not alone on this journey.
    Today started out really rough, he was angry and was not leaving the house, with much persistance we got him in the car. On the hour long drive I spoke of different people that we have loved and cared for over the years and how sometimes they had to be in the hosp, and it was for the best. So by the time we got there I said, oh look the kids are here, lets go see them. We we got in and he was happy to sit in his big chair and watch a movie with Troy. We spent the afternoon watching TV with him. the kids left at supper time and I waited until he was sleeping(that was easier on both of us) to come home. I was good all the way home, but it was so hard to come into an empty house and even worse to look at the spot where his chair should be.
    I will go back in the morning to see him.
    I will be ok, just need to adjust.
    Thanks again for all your support!
    thinking of all of you and your LO's
    Kathy
    •  
      CommentAuthorNew Realm*
    • CommentTimeJan 8th 2008
     
    Sending warm hugs to you. I am identifying with the feelings you describe....house feeling empty, and the awkwardness of seeing the empty spot where JR's chair would normally be. Always know that your decision was a good one. You will adjust and be well rested so that the time you have for visiting JR will be real quality time.

    Take care,

    Diana
    • CommentAuthorcarewife
    • CommentTimeJan 9th 2008
     
    Northstar, Jane, Diana, Darlene, and all other spouses: Here I am at 4:45 a.m. (been up since 2;00) roaming my empty house and t rying to get rid of aching legs. I don't sleep much anymore, especially in the early hours . I often wonder how my loved one is right now. It isn't natural for him to be there and me here. I sometimes wish I had children at home or was working still so I would be occupied more. Yes, my partner has been gone from our home for several years but I still miss him so much.

    However, even in the darkest hours, I have no regrets about placing him in the VA home. He has been and is getting the best care he needs Doctors and trained staff are available for him, he is fed a diet that he needs , and is being bathed, bodily needs met , all of which I cannot do and cannot afford a full time person to be here for him. What I am trying to say is that most of us do have to find a place for our husband/wife some time in the progression of Alzheimer's ; don't feel guilty, just know you have done the kindest, most loving, self sacrificing, thing you can do and you have honored your wedding
    vows and will continue to do so as his/her advocate. He may not know you but you still know him and remain loyal to the person he/she used to be.
    • CommentAuthorJane*
    • CommentTimeJan 9th 2008
     
    carewife,
    You are saying most of us do have to find a place at some time in the progression. Is this always true? can the person not be cared for at home all the way through this ordeal as Sandi seems to be doing. Of course I know that she had to place her husband for a short time because of agression, but do all Alzheimers patients eventually become agressive? I really do not think so. I read sometime back that only 10% of Alzheimer patients go through agression. I know that a caregivers health and other things can and do cause placement of the loved one but I guess I am asking is that always the case, can they not be kept home and hospice used in the end. I am not saying that placement is the most horrible thing to happen, in many cases it is the best thing that can happen and in my case my very well be in the near future but all I am saying that it is not a certain fate.

    Jane
    • CommentAuthorJane*
    • CommentTimeJan 9th 2008
     
    Kathy, I am thinking of you even more today. I know your heart had to break as you thought of JR waking up and you not being there for the first time. I would not have thought about leaving while he was asleep but guess that would be the best way to exit for the first time. I know the thought of him waking to a strange place had to worry you, but then I wonder when they reach this stage do they always wake up to a strange place even while still at home. There is so much that is unknown with this disease.

    I will have to agree with Sandi, the later stages are much easier to care for as the resistance is not as much as in the beginning, but then it is all so very sad. makes me cry cry cry.

    Jane
    • CommentAuthorcarewife
    • CommentTimeJan 9th 2008
     
    Jane, I'm sorry if I made you conclude that I felt nursing home placement was inevitable. I just feel that for many of us it becomes a painful decision if our spouse has been afflicted for a longer duration or our health precludes us being the primary caregiver any longer. Some people are able to keep their DH at home and I have great admiration for them.

    I want to reassure the person who has to place their loved one in a nursing facility that they are not to feel guilty if in the progression of the disease that they must do this. It is not weakness or a fault in them that they can no longer be the primary caregiver. Each of us must do the best for our dear one and us and whatever we do is done from love and for the ultimate good of our spouse.
  5.  
    There's a lot of difference among people and their strengths. Some of us have a greater gift for nurture than others. I can say this, because I'm among those who aren't so hot at it. The whole issue of nursing facilities vs. caring for the LO at home until the end is kind of a "hot-button" issue. Somewhat, I think, like the whole "controversy" regarding working mom's versus stay-at-home moms. Everyone would like to have her(his) choice validated, or feel assured that he/she's done the "right thing," but we just can't do an across the board, uncluttered comparison with the choices other people make because our personalities, resources, skills, situations, (and everything else,) vary so so much.
    I think those who insist that nursing care is not "inevitable" are correct. It is not inevitable in all cases.
    I think those who realize that it's not doing them or their LO any good for them to keep trying to do something that's tearing everyone up, and choose a facility arrangement have generally made the correct decision as well.
    I don't know why we have to feel so guilty about this stuff. I guess it just goes with the territory.
  6.  
    Emily, you are so right about the gift of nurture....I didn't have it at all when my husband was cursing, fighting, refusing to bathe, urinating in wastebaskets, etc. I was at the point where I didn't know if I was going to kill him or commit suicide. When I finally started taping our home life so that there would be proof in case something horrible happened, I realized I was at the end of my rope. So, I found a wonderful AD facility for him and he stayed there for almost three years. When he couldn't walk, talk or move any longer there was no reason not to bring him home. I was spending hours every day at the facility and was basically caring for him there...sounds nuts, doesn't it? So, now he has been home three years and we are still at it.

    I would never question any decision someone made to place an LO..I know from first hand experience how awful it can be. Even if you have a docile and loving LO, the sheer amount of time and effort that is needed on a daily basis is mind boggling. Add to that the stress of trying to keep your own sanity and maintain some sort of life of your own, and you have a recipe for disaster.

    If I wake up some morning and decide I can't do this anymore, then I will seek another home for my husband. It will be easier this time since he won't have to have a secure AD unit. I had a terrible time getting anyone to admit him to a facility. No one wanted a young, strong and aggressive man to deal with. I couldn't argue with them...I didn't want to deal with it either.

    So, before I write a book, what I am saying is that I agree that not one solution is good for everyone. No one should feel guilty....we got dealt a pretty bad "hand" and we just have to play it out the best we can.
    • CommentAuthorJane*
    • CommentTimeJan 9th 2008
     
    No, No, No, I did not mean to make anyone feel guilty about placement. Many days I feel I will have to make that same decision, so many people, not just carewife, but almost every person I talk to all say that placement is in their future, I was only wondering if the disease itself caused everyone to have to place at some point. Please do not take me wrong. I so many times come across in a way that I am not meaning to when asking a question or making a statement.

    Jane
    • CommentAuthordarlene
    • CommentTimeJan 9th 2008
     
    I think the answer to placement is quite individual. To keep them at home and have help sometimes the cost is as much as a care facility. Guilt should not play a part of this, but it does. You do the best you can. Our LO is in a world of their own and our job is to make them as comforatable as you can whether at home or ina facility.
    I know I want the best for Ralph and where he is now is where he should be at this stage. It does break my heart that this is what I had to do for my own health, but I see him clean, shaved and well fed. Caregivers who do love what they do and show this as they care for him.
    Darlene
    • CommentAuthorNorthstar
    • CommentTimeJan 10th 2008
     
    I know for us placement was the best answer for both Jr, I and our children. he is now getting he care that I could not provide at home. He had a vry good day today, I stayed home and painted the living room, it was good therapy! Troy went to see him and assisted with his shower and change of clothing.
    JR is completly unable to walk or stand on his own now, I am hoping that he will rally back again. They are running more tests to see why he is declining so quickly.
    Thank you to all of you for your support
    Kathy
  7.  
    Kathy, you are right about placement for JR...when you can't provide the care they need at home a good facility is a blessing for all involved. It is not the end of the caregiving, that is for sure...but you are able to spend quality time with him and then go home and get rest and "therapy". Congratulations on painting the living room....hard work, but it feels good when it is done, doesn't it?

    Keeping you, JR and your family in my thoughts.....
    • CommentAuthorNorthstar
    • CommentTimeJan 11th 2008
     
    Good Morning Sandi
    Yes it does feel good! I used to always paint/ redecorate if JR was away, this way it did not matter how big the mess etc, I could just go until it was finished.
    So it felt like a very "normal" day.
    And I can finally speak about him and not cry my face off. Of course that is not to say that the pain I feel missing him is huge, but I think today that I will make it!
    I just called the home and he had a good night and even chatted with one of the other members, so that was very good. Our son said he was in good spirits yesterday, did not even ask about me, just looked for the dog :) which is what I expected, as in the last few weeks he did not know I was here even when I was. His delusions are worse, as is his mobility. But I expected a decline and I am hoping for a rally in the coming weeks.
    Both the Dr's and the staff at the home are stumped as to why he has declined so quickly, we all think there must be something else going on. I hope they may be able to get to the bottom of it. We have him off the Namenda now and I am going to wait a couple of weeks and see if we should be looking at other drugs.
    I have stressed to the nursing home , that both our children have full right to any discussions about JR and that we will all stand together, they say they can see what a loving family we are, made me feel good, both to have the children and I all on the same wave and also that the care staff could see how much we loved JR. Troy did stand his ground on a shower for JR, JR did not want to go with the aide, the care aide told Troy they would just force him in. Troy said, no he would not be forced and that one of us would come and bathe him if that is what it takes. So he showered him and we will each make sure that until he is comfortable with the staff doing that we will do it for him. He still has enough going on in his mind that he wants his dignity.
    This forum is so good for me to just pour out some of my feelings, I am so grateful for the release!
    I guess I will have my coffee and Jake(the dog) and I will go spend some time with him, as well we need to take his dentures in and get them marked so we know they are his.
    thinking of you all in your daily struggles
    Kathy
    • CommentAuthorpat
    • CommentTimeJan 11th 2008
     
    Kathy,
    Still walking with you in our thoughts and prayers. Be strong and write all whats on your heart. We are here to send you hugs and support.
    Thanks for sharing,
    Pat
    • CommentAuthordarlene
    • CommentTimeJan 12th 2008 edited
     
    Kathy:
    How wonderful to have such support from your family. Not everyone has this and adds to the problems of this disease. My daughter has been here for a month to support me while Ralph and I adjust to his placement in the care facility.

    There are so many adjustments for our LO to make. We are still struggling with these adjustments. Ralph is still so confused about why he is in the home. It breaks my heart to see him and especially to leave him. I have put him under the care of Hospice this week. What wonderful, caring people. He will have a nurse twice a week check him, plus a caring doctor to look after him. I have been extremly frustrated trying to get his meds adjusted. Trying to talk to his doctors has been frustrating and trying different meds to help him sleep and his behavior problems. He did not sleep for over a week, but with help from the Hospice doctor he is now sleeping. I think we are on the right track now. Getting ready to go see him this morning. Have been under the weather, so have not seen him since Wed.
    I think about you and your family often Kathy.
    Darlene
    • CommentAuthorNorthstar
    • CommentTimeJan 12th 2008
     
    Thankyou to everyone for your thoughts, prayers and hugs.
    Each day is getting a bit better both for us at home and for JR as he adjusts to his surroundings. The care he is getting is awesome, I spent 4 hrs with him yesterday and am going back in this afternoon and bringing him some supper and some muffins.
    And yes I am so fortunate to have wonderful supportive children, they are the very best, and luckily live within 5 minutes of me so stop to see me often.
    Darlene
    I am so glad that things are going a bit better for you and Ralph, this can be a very frustrating all the way around, and it is hard for us to hand of the care of the one we have loved and cared for. I hope you are feeling better and have a safe drive.
    thinking of you all
    Kathy
    • CommentAuthordarlene
    • CommentTimeJan 12th 2008
     
    Kathy, Hope you had a good visit with JR today. Hugs to you as you both are adjusting. It is good that your children are so near.
    It is amazing how many times I just wanted to bring Ralph home even though I knew I could not care for him now. The caregivers where he is do it because that is want they love and it shows. He was much more alert today after two nights of sleep. I read to him from the National Geographic and any magazine with animals. He seems to be much more at home now. I hope to be able to take him out next week for a ride and lunch.
    Darlene
    • CommentAuthorNorthstar
    • CommentTimeJan 13th 2008
     
    oh I understand so much about wanting to bring them home, tonight it is taking everything I have not to run back to Dawson, it was easy this week while I was off work, I spent 5-7 hrs a day with him. Now it will only be short visits. and I am feeling the stress of it tonight. I feel lost and sad. I was so angry this morning , got there just after 8 and he was sititng in his chair, no music or TV, and I have stressed to them many times to please either play the radio for him or the tv. Little things like that really bug me.
    Good night all , I am thinking of you
    Kathy