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    • CommentAuthorNicky
    • CommentTimeOct 12th 2017
     
    We have been married for 44 years & my spouse has Alzheimer. He was diagnosed 3 years ago when he was 64 yrs. I've had a very difficult time accepting this disease at a young age. I couldn't take care of him any longer at home, so I placed him in a assisted living facility 4 months ago - I visit him every day, but I'm finding it difficult to live alone - I feel lonely & sad. I've joined a couple of groups to take me out of the house but I miss the life we had, the man I married & the life we should be having in our "golden years". It makes me angry that we've been cheated out of growing old together & that our children don't really have their dad & that our grandchildren have been robbed of their grandfather.
  1.  
    Hello Nicky. For those on this forum, your situation is all too familiar. I'm sure others will be along to offer support and advice as needed--here in this club where nobody wants to be a member. With your husband placed, it is important that you take the time you need to figure out what works for you in terms of the "new normal." Life has not turned out as you had hoped, so you have to put together a new life. We all have. And of course, you still have a million things to do in terms of your husband, even though he is placed. So I would just be gentle with yourself--don't try too hard or "should" on yourself--and just gradually put together a pleasant day to day life doing things that you authentically enjoy. You may find, as most of us have, that "civilians" don't really "get it"...but people on this website do "get it" all too well, and I know will be here for you. You'll get the straight skivvy here--not a bunch of stupid platitudes. From falls to poop to confusion to exhaustion and loneliness, to financial and legal matters, to bereavement...yup, been there done that. Welcome to the Merry Band here in Happy Hollow--we're all determined that Al Z. Heimer may get (or have gotten) our spouses--but he's not going to get us!
    • CommentAuthorRona
    • CommentTimeOct 12th 2017
     
    Well said Elizabeth and welcome Nicky. My wife was diagnosed in 2012 right at her 56 birthday but really had been going on for years prior. She has been in a extended care facility now for 15 months she was way beyond assisted living. We here get it I have written many times about the difficulty I have watching this decline gut wrenching and nothing we can do about it except make sure they are well taken care of.

    Life must go on as Elizabeth says Alzheimers may get one of us but we have to make sure it doesn't get both of us. So i try to make everyday as good as I can I know a platitude easy to say hard to do but it is a place to start. For me I started doing the things I could not do for so many years. I skiied 22 days last year and plan to do the same this year, golfed a number of times this summer, and yes I have started a new relationship. everyone is different and I certainly know this path is not for everyone but it is working for me. Good luck come here often I do it is the one group that gets it and has been a lifeline for me as I try and rebuild a life. Don't get me wrong I still have one foot well entrenched in the dementia world and it still consumes me at times, but the other foot is in the real world and the real world is a wonderful place.
    • CommentAuthormyrtle*
    • CommentTimeOct 12th 2017
     
    Hi Nicky, Welcome to this site. We understand. It is so, so hard to see our spouses deteriorate and at the same time, face it alone. So many of us, myself included, have admitted our spouses to long-term care and ached from the loss of their presence at home. Not to mention the loss of a "normal" life.
    • CommentAuthorbobbie
    • CommentTimeOct 14th 2017
     
    I guess it is a new normal, Myrtle. I just hope for a good day at the care center. Nicky, glad you found us. This board is a life saver. We all hold the bucket
    for each other. And it has helped me adjust and readjust. One thing for sure, I know when I sit here and cry, I am never crying alone!
    • CommentAuthorCO2*
    • CommentTimeOct 14th 2017
     
    Welcome Nicky to our little group. We all honestly get it. It has been 2 years 5 months since I lost my husband and I am still working on creating a new life. All the feeling you are having are all very normal. Elizabeth always says things so well and has a way of putting things in perspective as do many others that have been around a while. I still have days when I yearn for my old life but it was not to be. I feel blessed that I even survived honestly as there were days when I doubted I would make it. I had to place my husband in assisted living because I just could not manage it at home and I cried more then I think than I did at his passing. To'put him out of his house nearly broke my heart but in order to survive I had to. I know you cannot see it now but you will be a stronger person for having gone through this. God bless. You r not alone!
    • CommentAuthorRodstar43
    • CommentTimeOct 14th 2017 edited
     
    Welcome Nicky. Your right - cheated, cheated, and cheated some more. Please, contibute some more of your experiences. Early or later onset of AD is not for the faint harded.
    My DW started 7 or 8 years ago, she was 66. Cheated, we were just going to start a ranching operation.
    We did, I gave less an less as the AD advanced.
    • CommentAuthorRodstar43
    • CommentTimeOct 16th 2017
     
    Just came back from hospital after an Radio Frequancy Ablation (neurotomy) of nerve in neck in effort to stop chronic head pain. Not fun hour. Thanks to daughter-in-law I made the trip.
    now, DW forgot what happend to me.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 16th 2017
     
    I hope it gives you relief. I assume you have had it done before.
    • CommentAuthorRodstar43
    • CommentTimeOct 16th 2017
     
    yep, had them before, a little relif but some days bad. The Doctor has not given on me, so I won't. I tell you what, hearing the same questions when you'r pain level is on high is hard but, maybe the diiistraction helps. I almost worry, what, when it is just me, how will that go. One more neurotmy next Monday. This after noon, pain hard, thank goodness DW was on Normal. Aleep now. Which reminds me she sleeps a lot more now. Is tha AD or something else? Alot = 9 to 11 hours.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 16th 2017
     
    Yes sleeping a lot is normal. Not uncommon for my husband to sleep that long. Sometimes I think in the mornings h e lays there with his eyes closed so he doesn't have to face the day.
    • CommentAuthorRodstar43
    • CommentTimeOct 16th 2017
     
    Interesting, Charlotte, just not facing today. I wonder is it her or me?
    • CommentAuthorRodstar43
    • CommentTimeOct 16th 2017
     
    Just thinking, not facing today. Made realize, or remember, just not things or events that I look forward too. Sad, to just endure for now. Optimism lost. Where or when did I "loose" it.
    • CommentAuthorNicky
    • CommentTimeOct 17th 2017
     
    Thank you for welcoming me. It's comforting finding a place to share with people who really know what it's like. Yes, I agree with Elizabeth that I must put together a new life. I'm trying to go out more & meet new friends. What has made matters worse is that about 1½ year before my husband was diagnosed, we moved from our home town (both of us born & raised there) to a new city & new province to be near our daughter & her family, which also brought us a bit closer to our son & his family who lives in another city. When we moved we did not know my husband was sick - he managed to hide it, but as soon as we moved he couldn't hide it as well anymore. Initially, we just weren't sure exactly what was wrong with him. We had never moved, so the move alone was a big adjustment, but realizing something was wrong with my husband was devastating - those 2 changes together were unbearable. Being uprooted, away from friends & familiar surroundings, trying to meet new people & make friends, trying to live our normal life was so difficult. He did not want to hear or talk about his memory loss - he told me he would never accept his condition & he never did. He was always frustrated, discouraged or angry. He blamed the move for his condition because he felt he was fine before & blamed me also because I wanted to move more than him - he told me he should have never listened to me. These have been the worst 4-5 years of my life - I've felt lost & alone, trying to find some kind of comfort - I feel I've been living a nightmare. So, that's why I'm making the effort to go out more & it's helping me cope. At least while I'm out with friends I'm not feeling so lonely & sad - it's a distraction.
  2.  
    That sounds pretty familiar, Nicky. We also moved to a different state in the Heartland to be closer to family and, in our case, to take care of my husband and my mother within the family. I left my job, my friends, my church, my house--all that I was perfectly happy with and would never have left except for the Alzheimers. It turned out to be a mixed bag. We did get my husband and mother taken care of without either of them having to be placed. They both died in 2014--it was a double whammy, even though my mom and I were never particularly close. You only have one mother, and I've had the dickens of a time integrating the loss of both of them in the same year. Then two weeks after my husband died, DD left s-i-l . She ended up selling the house I had purchased for her and took the grandchildren and moved an hour away, buying a similar house but in Fancy Pants Town. So more losses. It was very hard, because s-i-l had done so much hands-on care for my husband--was like a son to him--and functioned like a nurses aide even though he is an attorney. Poop patrol, difficult transfers, picking him up off the floor, the whole bit. To see him booted out, and him and I more or less left on the curb with the trash bags, was very hard. DD is happier now, and the kids are in a top school system, but boy, did she do a lot of emotional damage to others. And financial damage to me--gave her way too much, way too soon. (Live and learn.) But anyway, what worked for me was moving back to my old town in New York and getting an apartment. I am sooooooo much happier here. I still have the house in the Heartland, and do genuinely like it. But I can't seem to hook in down there socially--I'm friends with the neighbors on my little road, but they are all married couples and very involved with each other and their extended families. They include me in things all the time, but I feel like a fifth wheel. And they go home to each other and I go home to my dog. (Oh yes, the dog. Very time consuming, but a good little friend and companion--got him after Larry died--for me, a good move.) In NY, it just seems like there are tons of single people for whatever reason, and so much to do that I love. Lots of art, music, interesting civic events, choir singing, Irish class, you name it, and that's just here in my town, without even going down to Manhattan. And all the old social connections kicked right back in, so there's always somebody to call and hook up with if I want to. But this is my town, so I'm perfectly comfortable doing things by myself, too. It's home. I'm not selling the Heartland house yet, but I have some decisions to make in a year or two. I was in the Heartland for not quite four years before getting the apartment back home, and I tried everything to bloom where I was planted. But I would say that even with the best of attitudes, not every location is going to be right for you. I don't know whether you could go back to you former area, but you might try going back on some trips or visits--just stay in a motel and cruise around like a visitor or tourist--and see what you think. It may be that you need to find a place for your husband in your old town, and an apartment for you, and just get yourselves back there.
    •  
      CommentAuthormary75*
    • CommentTimeOct 17th 2017 edited
     
    Nicky, Elizabeth's advice is hard-won and invaluable. I, too, have found that the friends from earlier years in my home town are the ones I cann count on. Like Elizabeth, I've put a lot of effort into "making everything bloom where I was planted," but history does counts. Whatever you decide, know that we are here to support you.
    • CommentAuthormyrtle*
    • CommentTimeOct 17th 2017
     
    Hi Nicky, I think that many people our age experience this situation, since Alzheimer's strikes older people and it is the same time many are retiring and moving to less expensive areas or warmer climates, or regions where their children have settled. In addition to elizabeth*, I can think of two of our members (Joang and MaryinPA) whose husbands were diagnosed just after they moved. It's a tough spot to be in. The afflicted spouse loses their bearings and their symptoms can be more obvious. A stable support system takes years to form and you lose your old support system, even if you move to be near family. (And as Elizabeth's experience shows, sometimes family support does not materialize.) I think it's hard to make new friends when you're older. IMO, friendships are born of common experiences that often last for years - school, work, family and romantic tribulations, etc. As far as living in a nightmare, you probably would be doing that even if you had not moved, although moving undoubtedly made it much worse. I do know that people in your situation have survived and found new friends and reasons to live. I sure hope that happens for you.
    • CommentAuthorRona
    • CommentTimeOct 17th 2017
     
    Nicky and Elizabeth ditto ditto ditto. We also moved to help with Lisa's parents, stoke and vascular dementia then
    f-I-l developed Alzheimer's, but little did we know that Lisa was already well on her way. Within a year of fil being diagnosed Lisa was going through the same tests a nightmare. So yes then being in a new twon Where we knew nobody, except our realtor, and trying to make new friends with a spouse that is already in the mid stages a difficult and lonely task. I have written before how I felt our friends never abandoned us which was fabulous but. One of them loved close.

    Nicky like you I tried to get myself out there and meet new people have always been a social person. For me 7 years later and Lisa in extended care now for 15 months it has worked. Still a long ways to go but I feel I have a life again outside of Alzheimer's. Good luck and hang in there.
    • CommentAuthorNicky
    • CommentTimeOct 18th 2017
     
    I like Elizabeth's description about "not blooming where she was planted" & glad to hear she found happiness again. At the beginning I certainly felt I wasn't "blooming" but I'm feeling better about that now. But I probably would not go back to my hometown. The reason we moved was to be near our grandchildren - so I wouldn't go back there to be 8 hours away again - I was very unhappy being that far away & not being part of their lives - I didn't want to be a long distance grandmother anymore. Now, I'm 5 minutes away from my granddaughters & they love having me in their lives. My son lives a few hours away, but he's still closer that 8 hours - so I see him & the grandsons more often than I did when we lived in our hometown. And thinking about it I seem to have more friends & acquaintances here than I had in our hometown. My husband & I have always been each others best friend & doing everything together - so we didn't feel the need of having too many friends in our lives. I had one good friend I would walk with daily & I miss her a lot, but we talk on the phone. So when his Alzheimer became worst & we couldn't really communicate properly, I lost my best friend. My needs had changed & it was very difficult to figure out what exactly I needed now. All of a sudden I needed other people my age in my life - something I never really needed before - I didn't even know who I was anymore. It felt strange trying to fill a need that was foreign to me. Since I had to find friends I joined a couple of groups - not something I really had or needed back in my hometown. When he was still living at home, I had someone come in 2 afternoons a week to watch him & I would go to the groups. Now, that's he's in residence, I still attend those groups - my family & friends strongly suggested that I do not stop seeing people even though he's not longer in my total care. So, I've given myself "permission" to enjoy myself & I know I have the right to be happy again. I'm working hard at accepting that I can be happy even though he's not part of my "normal" life anymore, because he's the one that made me happy..... I'm still happy when I visit him daily because he still recognizes me, even though he declined rapidly in the past few months, which is why I had to place him.
    • CommentAuthorRona
    • CommentTimeOct 18th 2017
     
    Nicky thanks for sharing I enjoyed reading how you are doing. A positive comment which is great. I know when I post most of the time it is about how I am feeling and about how hard everything is so it is great to read about somebody doing well which you are. So I slip in every once in awhile that I am doing ok and enjoying my life outside of Alzheimer's then I almost feel guilty for saying that. We shouldn't feel guilty for starting a new life? I too forced myself to not sit at home but to get out and meet people. I think the point is there is hope and some of us are seeing that for others I know it is much harder.

    I hate this auto fill when I go back and read my last post it makes no sense ie one of them loved close should read none of them lived close. That is only one of my auto fill screw ups.

    My visit yesterday was good but I found it very hard. When I got there she was in another house (pod) listening to soft music with a weighted blanket over her and a stuffed animal holding up her head while she slept. One of the workers was massaging her hand. It was nice to see her so calm but it hit me like a ton of bricks how far the disease had progressed.
    • CommentAuthorRodstar43
    • CommentTimeOct 18th 2017
     
    Rona, turn off the autofill in settings, then mistakes will be yours. I am glad I did.
    • CommentAuthorRona
    • CommentTimeOct 18th 2017
     
    Thanks Rodstar auto correct is off so all mistakes are now mine.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 18th 2017
     
    there is always the option in the upper right hand corner of your post to go back and edit it if the mistakes bother you.
    • CommentAuthorRodstar43
    • CommentTimeOct 18th 2017 edited
     
    Charlotte, had email come back. I reread you member page and noticed your Workkamper experience an felt a little in common as my DW and I did that sort of thing as full timer RVers for 4 Years. 2000 thru 2004, Last really good times.

    I was. bouncing around the web and found at a Grad school in Ohio the followin artical:

    http://blog.case.edu/case-news/2008/08/15/dementiacaregivers

    Case Western Reserve Universality

    They agree with our folks's conclusions.

    Also, somthing to watch in our selves is letting the stress and depression getting to causing to us what we hate.
  3.  
    Rodstar43, my DW and I were never full timers, but we owned and enjoyed some sort of self propelled RV for 40 years, beginning with a slide-in pickup camper that took us cross country with the kids to Disneyland in 1967, working up to a 28 foot Class a Airstream motorhome that was DW's favorite around 1990, and ending up with a series of Class Cs that were more practical after retirement when we'd spend two or three summer months roaming up and down the spine of the Rockies. rarely spending two nights at the same place. (As a matter of fact, I became so enamored of the RV lifestyle that in the early 1970s I had even quit my engineering job and tried to jump start a business renting motorhomes to tourists flying in to Disney World in Florida, but had to put my tail between my legs and return to engineering after three years when the Arab oil embargo put an end to what might not have been too good an idea anyhow.) Some summers we'd have no agenda at all, voting at every crossroads as to which direction to take -- fearless as long as we had food in the fridge, gas and water tanks full, and holding tanks empty -- there was always something wonderful over the next hill. Other summers we'd have agendas like rock hunting, or retracing the Oregon Trail or the Lewis and Clark Trail, or visiting mountain men rendezvous sites, or maybe a wildflower tour. DW was my expert map reader and navigator through most of those wonderful years, and her loss of the ability to make sense of a map was one of the early signs that something was going wrong. She survived for another eight or ten years after those first signs, but with increasing deficits. We made our last western trip in 2003, but continued shorter jaunts up until just a couple of years before she died, pursuing hobby activities aimed at trying to keep her "connected". At this point I'm back to a 31 foot Class A that new wife Joyce and I used for a seven week western trip in 2013, but nowadays it just sits out back as a refuge in case of hurricanes, and for occasional group transportation to funerals of family members. It's no fun getting old and having to slack off on stuff!
    • CommentAuthorLindylou*
    • CommentTimeOct 19th 2017
     
    In 2012 my partner and I purchased a little Aliner trailer which we used for extended vacations for two years when I retired and she was still in early stage of dementia. We enjoyed our trips together, learning as we went how to accommodate her disability. The following years we took shorter visits, never longer than a week before we would return home. And for the last two years it has sat in our back yard.

    The really neat thing about this camper is that while it looks like a pop-up when we pull it, it is incredibly easy to lift into place - done in three minutes by this seventy something senior. I look at it now and think, do I want to travel alone?
    • CommentAuthorRodstar43
    • CommentTimeOct 19th 2017
     
    Gourdchipper, I wrote a long paragraph about Our RV days. when i clicked on sbmit i got a red arrow message then poof. gone. sorry
    eeeeeeeerrrrrrrrr
  4.  
    Rodstar43, when you get that error message just click submit again -- happens to me often because I'm wordy and slow.
  5.  
    Rodstar43
    ........ I used to have this same problem with a long contribution but Wolf
    taught me how to copy and paste. Now, after writing a little, I hold the
    control key and press C (for copy) .... Then if it disappears, I hold the
    control key and press V (for paste) ....... And it reappears.
    • CommentAuthorbobbie
    • CommentTimeOct 19th 2017
     
    Our RV was my favorite house. You could mop the kitchen floor with a mop. We traveled with a group of VCB ers (volunteer Christian builders) help refurbish camps and small
    churches. We did this until Alz. put a stop to it. So much fun.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 19th 2017
     
    bobbie, it was always our dream once he started receiving SS so we could be self supporting to join one of the Christian RV groups like S.O.W.E.R.S or MAPPS. Unfortunately AD reared up a couple years before SS. :-(

    If I am able I would like to resume doing the workamping when he is gone. There are jobs for singles you just have to look harder and sell yourself harder. But, the way it is going or rather he is going, I might be too old by then!
    • CommentAuthorRodstar43
    • CommentTimeOct 20th 2017
     
    Before the RV was the tent in Alaska. The first RV was a pick up truck with a camper on back - in northern Japan. nothing like camping in the rice fields or by babling streams. After that, we enjoyed a pop-up tent camper in Texas. It brought the family closer together than any other one thing. We could load a small sailboat on top of the trailer along with bicycles and away we would go. We bought a big station wagon and it was great until the 1974 gas wars. Our plan to step up to a travel trailer was put on hold. We moved to California, but could only hold off the RV fever so long. In the late 80s we bought Old Doge Commander. Made wonderful trips including to Canada. Well, in 1992, we stepped up to a 35.5 foot Southwind, our first and only new RV. In 1999 we retired and sold the California home and headed out. Home was were we parked it.
    Winters in Florida, States coast to coast. we found we needed extra income, so we worked part time for Camping World in Texas an later in Utah. we also worked part time a couple of years for Southeast publication, the company that makes most of the RV Park maps. that gave excuses to be, in southern Florida, California, Montana, Idaho, Oregon and Tennessee. I started to suffer more so we bought a home in Idaho (never lived there before). We wasn't that long and we had,to go get my dementia ladened mom. on last big trip landed us in Texas, so we got a small 20acre ranch. it was there we found the Alzheimer road.
    The best years of my life were being free on the road. Oh to be free like that again.
  6.  
    Rodstar43, I was actually introduced to this forum by an old timer named Sam~X, another Texas "rancher" from near Abilene. I had met him on a rock hunting trip at a national forest campground in New Mexico before either of our wives developed AD. His AD journey proved to be much rougher than mine as his wife was diagnosed with Pick's Disease, with associated behavior issues that I never had to deal with. Before AD entered the picture we had emailed back and forth about rocks, but then the conversation gradually switched to AD as that became the focus of both our lives. We maintained an off and on correspondence for ten years or longer until he finally lost his wife about a year ago, but I haven't heard from him lately. Hopefully he's healed and back to hunting rocks again.
    • CommentAuthorRodstar43
    • CommentTimeOct 20th 2017 edited
     
    Gourdchipper, before New Mexico we lived for 8 years near Cosicana. I read enough about Pick's disease to agee with you that, thank goodness I only have AD to deal with. Nerver heard of Pic before.
    • CommentAuthorRodstar43
    • CommentTimeOct 30th 2017
     
    Bobbie, will you ever do vcb work again?
    • CommentAuthorRodstar43
    • CommentTimeNov 10th 2017
     
    oh the trials, update on DW. tests show a 9 mm spot on rear of lung. Has cancer spread or is it an infection? Doctor gave antibotic just to check it out. I bet cancer has spread.
  7.  
    Sorry to hear about that, Rodstar, although I know things aren't going good. Thinking about you and your DW tonight. You are just getting hit with one thing after another. Keep us updated when you get a chance. Sending warm thoughts and all good wishes by ESP.
    • CommentAuthorRodstar43
    • CommentTimeNov 12th 2017
     
    This weeke end is the. pits. Head and neck pain on a tear. Fortunately, DW going Along with it has made life a little eazier. Turned down invite to son's house for BBQ chicken, couldn't stand the pain. DW gets worroried then calls kids. How much can I take? It makes listening to same old questions from XW harder. I just want t scream. Did you hear me?
    • CommentAuthorbhv
    • CommentTimeNov 13th 2017
     
    I heard you Rodstar. I don't know why, but I don't get the same question much any more. He used to do that when he would ask what we were doing tomorrow and I was stupid enough to tell him. Now I dont bother. I just wait til I am ready to go. Sometimes I just don't answer. Perhaps it is experience with my MIL. With her I just pretended that each time was the very first time she asked that. What happens if you don't answer her questions? Especially about the dead people.
  8.  
    I hear you, too, Rodstar. Sounds like you need the knotted rope to hang onto. Here it is--and you know the rest of us are hanging on to the other end. We're here for you and we've got you.

    x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x
    • CommentAuthorRodstar43
    • CommentTimeNov 14th 2017 edited
     
    About three weeks ago DW's appetite went to near zero. She eats a bite then is full and uninterested. She sAys she feels so full. She has went from 124lbs to 112. We will see doctor today. I Have no idea what brought this on. Cancer, Alzheimer's or something else.
  9.  
    Rodstar, it sounds like your wife is very sick, whether from the Alzheimer's or cancer, or both. With that sort of weight loss, you might want to get a hospice consult. They might be able to help with the feeding issues and stop the rapid weight loss. If nothing else, they will assess her overall health and give you some valuable guidance about treating her. Just because you get a consult does not mean that you have agree to hospice, but it sounds as if you need more hands on deck with her care and your well-being, as well.

    Sometimes there are no specific answers to medical problems. A decline can be a mixed bag of many causes. And sometimes there is no fix, just acceptance. For those of us who have been through the disease from beginning to end, acceptance is the hardest and yet most helpful thing to do. It helped me to always consider whether my husband was comfortable, free from anxiety and pain, and whether my actions were done in his best interest or out of my guilt for not leaving every stone unturned. I came to learn that acceptance of his disease and ultimate fate was the kindest thing for both of us. The plan then became not trying to fix anything or even give it a name, but loving him and seeing that he was well cared-for.

    You may not be at this point - it is hard to tell on a thread. If you are not just tuck this little pearl of wisdom about acceptance in the back of your mind because you may need it later and accept it as a gift of the cosmos.
  10.  
    Rodstar43. Ask your doctor about hospice. Very often the weight loss is a sign she is ready. The doctor may be willing to sign off for it, and may even have a recommendation. Some areas have several to choose from.
    • CommentAuthorRona
    • CommentTimeNov 14th 2017
     
    Marche thank you for that comment. I have been wrestling with a couple of decisions and passing your test is it out of guilt or to not leave every stone unturned hit home. Lisa is not eating well she will eat fruit and sweets but not always she put on weight now she is loosing it. When you try to feed her other things she ends up just spitting it out. What to do I know when her mother was at that stage we talked about eating or not eating was one of the only descision that was left to her and that she could control and we accepted that but I have a hard time accepting this. On another point sil wants me to buy an electric recliner for her room, the ot, the nurses all say no she cannot use it and may become more of a stressor than a help, and a fall risk as she won't sit still and will continually be trying to get out of it. I agree and have told sil the comments but she is persistent and so easiest just to get it to show yes here I am I am doing everything I can. Guilt don't need it and why do I feel it why do I feel I have to do this. Don't necessarily feel they are meaning to guilt me but trying to help at least that is what I Hope. I inadvertently told my sil months ago that I was seeing somebody she then went to the facility and asked how often I was coming to see Lisa. I haven't talked to her about that but it certainly bothered me. I have been there all the way through and will be there all the way through. That is what we do isn't it. Because we choose to go with life does not alter that. They have no idea just ideas for me carry out.
    •  
      CommentAuthorCharlotte
    • CommentTimeNov 14th 2017
     
    Rona - unless you have given the staff permission to disclose that information, they should not be giving it. That is none of their business. I remember when my FIL was alive, my BIL had to give permission for them to speak to us - about anything pertaining to my FIL.

    Rodstar - so sorry she is loosing weight and not eating. There are drugs they can use to increase appetite if that is the way you want to go. If not, try getting her to drink things like Boost or Ensure.
    • CommentAuthormyrtle*
    • CommentTimeNov 14th 2017 edited
     
    Rona, I am distressed by your post. Whether consciously or not, your sister-in-law is using your conflicted emotions about your wife to manipulate you. Here are my thoughts:
    1. Do NOT buy that recliner. The medical staff have advised against it because it might be harmful to your wife. Surely you aren't willing to risk harming her in order to assuage your guilt and prove to your sister-in-law that you still care for your wife.
    2. Your sister-in-law is not your friend. As I'm sure you realize, telling her about the new woman in your life was a mistake. If you ever watched "Law and Order" on TV, you know that, "Anything you say can and will be used against you." From now on, think carefully about what information to give her.
    3. Instruct the staff not to give your sister-in-law private information about your wife, including how often you visit her.
    Good luck,
    myrtle
    • CommentAuthorRona
    • CommentTimeNov 15th 2017
     
    Thanks Myrtle for your comments. I didn't intentionally tell my sil about my new relationship I mistakenly sent her a text meant for my new partner that made it obvious. I then talked to her and told her I was seeing someone her comment was I don't know how I feel about that. My response if there is anything you want to know just ask me if not I won't mention it again. She never has and I never have mentioned it again that was months ago.

    I have mentioned my sil in earlier posts long before this happened and how I became defensive, you know the relative who is not there just has all kinds of ideas of what you should do. I had the discussion with her about how it made me feel she was feeling that I was just not willing to listen to her. So kind of clearer he air but the feelings are still there and I think justified on my part. However I have tried to not let that bother me and to take the high road as I feel it is not about me it is about Lisa and I want them to remain a part of her life. I don't want to alienate them.

    About the recliner the ot did phone my sil and they had a good discussion. Turns out the idea of having a recline that operates back and bottom independently may not be a bad idea she could still get out of it now and may be a good thing as she progresses and is not so active so going ahead with it ot agrees.

    When sil asked about how often I was there it was with a conversation with the head of the facility the only thing that was said was I don't know but I always see him here, I was happy with that response. They are Lisa's only close relatives so they basicly are next in line if for some reason I am not available or able.

    Anyways slways good to be able to vent these feelings and get responses helps to put everything into perspective. Don't worry I am still Leary and wonder at times if there is another agenda. As mentioned a while ago there is money involved and we all know what that can do.