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    • CommentAuthorSedgly
    • CommentTime7 days ago
     
    It's after midnight here... I've been tossing and turning for an hour or so.. no sleep..

    I wish it would warm up here but we've weeks to go before that happens... today we made it to 20 but won't be that warm again for at least a week.. more snow tomorrow... the skiers and snowmobiles love it..

    I'm not crazy about the snow any more but I'll take snow over tornados any day..I'm so glad the windy weather missed you.

    I too am burned out on all the responsibility...and Jim doesn't do much... but he does shovel the walk and take the garbage out... I am thankful for that...

    The attorney cancelled today so instead I shopped for a few groceries at Wal-Mart...(the place I love to hate)...I don't have the luxury of shopping without him..so we ended up with a variety of things we have no use for....I asked him why he bought a can of windshield de icer..and he informed me it was ether, used to start cold cars....later he looked at the can which said windshield de icer in large letters and said he had bought the wrong stuff.. it was supposed to be ether.... so he could start cold cars......I remember years ago when cars still had carburetors using it... but those days are gone....and he bought other weird stuff... I no longer try to sneak it back out of the cart....

    I can totally emphasize with you on the always coming back to the same thing....lately it seems even if we have a good day.. it won't last....that's part of my problem with trying to take care of myself....if I get away for an hour break it's almost worse to come back to than if I had never left...... it seems to be never ending.....

    I realize it does sound like a pity party...but it's not... it's reality.....I wonder how different our lives could have been if there was no dementia...guess ill never know....

    I'm starting to think perhaps I should be thinking of moving into one of the retirement communities...I think it would lessen the loneliness...and of course responsibility....he would undoubtedly fight me tooth and nail on it....
  1.  
    Sedgly, I'm going to be straight up with you. You are hanging on by a thread so here are some reccommendations.

    1) From now on make decisions based on what works the best for you. You are the caregiver. AD wants to claim you, too. If moving to a retirement community is the best thing for you, then do it. He is dependent on you and will fight tooth and nail, but in the end, he can't leave your side either. Here's the truth. You get to call all of the shots for both of you now.

    2) Try to get some outside help immediately so you can recharge your batteries. The drain from caregiving is constant and so great that you might not even know how exhasted and desperate you are. Make up fiblets. The Doctor insisted you get some rest. If he goes to respite, it's because you have to go to the hospital or some such story. Get other people to tell him the same story.

    3) Keep posting here. Absolutely. Writing is one of the things that caregivers can do to validate their feelings. We are nonjudgemental. We've been there and we all want you to survive this ordeal. No one understands what this living nightmare is like the way the good folks on this site do.

    4) Make a list of things you need to do to move into a more manageable situation. Try to deal with just one of those a day.

    5) Find something distracting for you. When I was in the trenches, I couldn't focus enough to even know how to distract myself and everywhere there were so many triggers. I have found since then that audiobooks are a godsend of distraction. One of the books I recently listened to was about living in Alaska, so I watched a few episodes of Life Under Zero. Silly as it is, it took me totally away from the current place and time. PLanet Earth is another favorite show to watch.

    6) Lonliness is a harder thing to manage. I think it goes back to introverts vs extroverts. Elizabeth had some good suggestions on another thread. The bottom line is that you have to make the effort to talk to someone and make that connection and if you feel misunderstood or judged, just move on. The latter is hard because you are already fragile and wearing your heart on your shirt sleeve, but talk yourself out of giving up. If there are understanding people on this website, there are understanding people in your community. You have to fish for them. Perhaps reach out on this site to some of the people at the same stage you are, like oakridge.

    7) Be kind to yourself. If you want to have a pity party, do it. Set a time limit, though, as in "I will think about this from 3-4 pm this afternoon. If it creeps into your mind at 11 am, gently remind yourself that you will think about it at 3 pm. Make another list of all of the responsibilities you now have. Then look at it critially and see how you can streamline or lessen any of them. Be single-minded about this. Your husband's wants ands idiosyncrasies don't factor in. This is about your survival.

    8) Keep posting. We are throwing you a knotted life line. Grab it.
    •  
      CommentAuthorCharlotte
    • CommentTime7 days ago
     
    Listen to Marche - she gives very good advice. If you are lucky your state has not changed the rules where he has to give consent to be placed in a locked facility. Of course, if he is not a flight risk, it might be different. Reminder: don't let this disease take two people. As for the store - would it work to put what you want up first, then the stuff he picked up and tell the clerk you don't want it? Maybe divert him to putting the grocery bags in the cart? I hate we have to do stuff like this or live this way.

    I too have to fight off wondering how life would be if AD did not invade our life.

    I know how much it helped when hb was placed those 6 weeks. When I brought him home it was good the first two months, then I started getting tired of it. He was so bored at home. Now he appears to be fitting in and happy.
    • CommentAuthoroakridge
    • CommentTime7 days ago
     
    The sun is shining, not very warm but makes me feel better to look out and see a little sunshine. Had a rough night, didn't get to sleep till after 3:30 then woke up later with terrible pain in my right shoulder. I've had bursitis, with impingement, and had evidently been sleeping on my right side. Couldn't seem to get turned over, DH woke up, couldn't understand what was wrong, thought I wanted him to get out of bed :) But I did get back to sleep for several hours. He told me to stay in bed - but the housekeeping fairy wasn't here - and someone has to do it. He then had the gall to say I looked like an old woman today :) had to really bite my tongue at that, LOL I don't like clutter but can't stay on top of it these days. Did get the dishwasher loaded and things put away so that helped - he just stacks things in the sink. Have to fold a load of towels, vac the front area then move the dust around a little. Debating if I should cook a meal tonight or just use leftovers. So used to the microwave, being without is a pain, LOL. Have to heat everything up on the stove and dirty a pan.

    We are going to be staying in the teens during the daytime, lower at night. Was supposed to start warming up Tuesday but saw this morning they are now forecasting more snow for Tuesday. Since dh has two dr appt (re)scheduled for Tuesday I'm not sure what we will do. Hate to reschedule again because it might turn out to be a beautiful day. Things change so fast around here. Want to get these appts over with so I can quit worrying about them.

    Sedgly, do you do any needlework? I haven't for years but I love embroidery and found it would relax my mind. I can crochet but my knitting isn't so good, I have to completely concentrate on it -- which means I can't think of anything else. I saw my knitting bag upstairs yesterday, with some beautiful yarn and a half finished afghan. Thinking I might unravel it and make something smaller that will go fast - but at the same time keep my mind occupied. Used to crochet little caps for Newborns in Need. I need to get back to that type of thing -- not a job that requires anything but something besides AZ to think about.
    •  
      CommentAuthorCharlotte
    • CommentTime7 days ago
     
    Where do you live? Sounds like here in SE Washington they keep adding more days of cold and snow.
    • CommentAuthoroakridge
    • CommentTime6 days ago
     
    SW MO. After we got used to living here we never bothered with the weather, a good 4x4 and we could go anyplace, anytime. But now, I don't like to be out when the weather is unsettled....we live 25 miles from town and the weather can change fast. Last report is worse weather moving in late tonight through Monday but Tuesday and Wed will be cold but dry, then snow again on thursday. Who knows what tomorrow will bring.

    Have to get a bale of hay out tomorrow, this last stretch of cold has pretty much done our pasture in. I've been feeding heavy when it's so cold at night but chewing on good hay keeps them warmer.

    An article on caregivers I read recently could have been one of my posts. The woman was saying he couldn't even say a complete sentence at home, then he gets to the doctor or someplace and talks and seems perfectly normal - so people think she's making it up. it was driving her crazy. This was probably the best series on caregiving I've read, obviously written by someone who's been there. In a different one a "leader?" said caregivers should be more patient, more forgiving, put themselves in the patients place. She got a lot of feedback, saying "...how dare she tell people that? They were tired of people saying just be more patient etc, AD took everything we have to give then keeps taking, it was often a hardship for the caregiver to just get up and go another day..." Sometimes it's just good to hear someone else say we know what you're going through. That's why I feel this particular forum is so special -- everyone knows what your days are. I'm sure not a single person I know would believe what we go through each day...unless you have lived it, you really can't imagine it.

    I will end this on a better note. I keep Readers Digest in the bathroom...one way to get a little privacy. An article on chefs using microwaves caught my eye since I have to buy a new one this week. A famous chef gave his recipe for lobster in the microwave. First put a live lobster in the freezer for about an hour to stun it, then put in the microwave for about 6 minutes. Finish with lemon etc. That just struck me so funny.....poor lobster, I think I know how he would feel, LOL.
    •  
      CommentAuthorCharlotte
    • CommentTime6 days ago
     
    My in-laws came walking off the plane from Boston back in 1978 carrying two dripping boxes with 6 lobsters. Hardest thing to do was drop those live, kicking things in the boiling water. Second hardest was eating it while pretended to like it. I don't like lobster or crab - too rich tasting for me.

    I agree - I get so tired of being told to: put myself in his place; be more patient he can't help it; learn to talk their language; etc. I guess if the person only lives a few years with it, it would be different, but when they live 10,15 or 20 years - one can only do so long or loose themselves in the process.

    Sounds like our weather is going east heading for you.
    • CommentAuthorSedgly
    • CommentTime5 days ago
     
    Hello all, a new day has dawned, which means we are all one day closer to spring..yay..

    Marche, thanks for your advice, I will try and heed your words

    I 1) have a hard time not considering what he thinks or says, I have always considered him and his thoughts and feelings..so this is new territory and sometimes tough to just ignore him...
    Though sometimes easy....a couple weeks ago he wanted to go 3 towns over for coffee... we had 3 feet of blowing snow and under no travel advisories....when I said no the incessant whining of 'its no worse than yesterday and we went then' started.....they eventually dropped the barricades and closed the road...I was pleased I had held my ground... it has never once gotten easier ... always a whiny, battle if he doesn't get his way....lately more anger than whining....

    2)I do plan as soon as winter eases to return to the VA and set up some type of assistance...

    3) I'm sure there is much knowledge and experience here, people who don't live it just don't understand it..

    4) I'm not sure about making things more manageable but I've started a notebook a few weeks ago of everything that needs to be done from simple things like changing the furnace filters to his Dr appointments...it seems to be never ending...

    5)I am attempting to simplify... I've always been the kind of person who needs at least three balls in the air to feel whole... if I flip on tv I have to have something to do while watching it....I plot.. I plan...so lately I've been forcing myself to only do one thing... if I turn on tv I put down the paperwork, phone and kindle... and amazingly what usually happens is I fall asleep.......I think my body is tired...

    My Dr has told me repeatedly, "stress is not my friend"...

    6) loneliness for me is a tough one... I am both an introvert and extrovert if that's possible... I love spending time alone and doing my own thing... on the flip side I also love being with people and having a good time....while most everyone I know knows about Jim and they all ask how is he? or how's he doing?Or does he ever hit you? Or are you going to put him somewhere??? They don't have a clue what they are talking about...it's not in their life....
    The loneliness I feel I don't believe can be relieved by seeing people... it is a loneliness in my soul...even when surrounded by people it is still there,....sometimes more so.....an emptiness. of a missing mate.... there is a large void that use to be full....and he is here, to remind me continually that he isn't here... if that makes sense.....

    Charlotte I so hope you get a break in the weather soon.. we don't get spring here till after Mother's day..usually with a mother's day blizzard..but we are set up for it for the most part...likely one of the best prepared places in the U.S.....I'm tired of the winter this year.....Jim changed some things to make it all rougher... (an open window in the shop that can't be closed.. a shop door that he some how adjusted so when it's closed its 2-3 inches off the floor..an altered wiring window...it all let's the cold in so pipes can freeze etc )by next fall I will have it all fixed....

    Oakridge, yes, I use to do needle work... never much of a knitter but crocheted many things from Afghans to nativity set, toys and bears ..doilies etc..haven't touched it for years...been trying to get myself interested in some type of craft like thing,...I also use to paint ceramics, do bead work, sew etc.... I had got my daughter a cricut last summer and she made some neat things with it so I picked one up last month...but I've never opened the box....maybe someday...

    when I brought my winter babies home from hospital they each had a hat someone had knitted...one of the daughters has a little side business of making hats..she does a lot of specialty orders but has the standard monkey hats, pumpkin hats etc...

    The lobsters... oh my, no,no,no....couldn't do it....

    Guess I better get busy... I'm sick with a cold, cough cough cough... my ears hurt but I think finally the doctor has the hormones where they need to be so I'm crossing my fingers and hoping for the best...

    Four days ago Jim switched again, from sweet Jim to angry Jim...
    • CommentAuthorSedgly
    • CommentTime5 days ago
     
    The rest of the story..that was too long for previous post


    Four days ago Jim switched again, from sweet Jim to angry Jim...
    Here's yesterday's example... remember, I'm sick...so last night I told him he could have a can of soup..he loves that Progresso pot roast soup.. all you have to do is dump it in a bowl and zap it a couple minutes....so he's going to get his soup..i tell him...theres a bowl in cabinet at end of kitchen, top shelf , left side....(same place bowls have been for 30 years.)....he goes in kitchen and shortly is swearing and screaming...he has gotten in to a cabinet in back of kitchen and got a very small bowl, attempted to put soup in it,, didn't fit...made a mess.... by the time I arrive in kitchen to see why he is screaming he has a large serving bowl he is now putting soup in....I walk to the end of kitchen but before I can do or say anything he is screaming ...he doesn't need me...... go away.... why am I always watching him....he doesn't need any help....etc etc.... I turn and leave without saying a word.......

    Our youngest son stops over and Jim thinks he will act this way with him.... son tells him he is a bully.. and he's not taking his crap... ..Jim is even more irritated...son is chuckling...hints of becoming physical are made... son laughs and tells him not to threaten him, he's not afraid of him...(did I mention son2 is 6'4 and 230, his last semester of college he took a job as a bouncer and discovered he could do very well as a bartender ..he doesn't hesitate to jump into any physical altercation) also at 29 years of age he's not a child...he tells me not to worry, he would never hurt his dad... but he needs to stop acting like this.... he will not or cannot accept it is not intentional........

    Today the snideness is still there, Jim keeps it just below the surface, always threatening to erupt....
    • CommentAuthoroakridge
    • CommentTime4 days ago
     
    Dh reserves his anger for me - Not sure how he would react if the boys talked to him like that. They would often clash even when they were kids. The boys are all 6'2" where he just barely made 6' with his shoes on - but his explosive anger could make up for a lot, and he is a master of the snideness!!

    When I logged on tonight it went to a few months ago - a post about the 5 warning signs of burnout....something like that. I scored 4 out of the 5, LOL. We go through the same process as you mentioned above with the soup - those are the times I used to blow up but have finally learned to do as you did, just turn and walk away. That makes him worse for awhile but if I don't respond he soon forgets it. I'm also better at remembering this isn't him but the disease.

    He is in a downhill slide right now....I'm wondering if it might be the Aricept and/or Namenda. I can't tell they've done anything and suspect he may be one of the ones who have problems with them. Will discuss it with the doctor when I go in next month. Yesterday he was terribly confused and then got angry which happens frequently. Today he seems lost, makes me feel bad for him. Now they say snow in the morning --- I want to get these two dr apps over with so bad - I'm sure they're tired of my canceling too.

    Oh, those hints about med alert bracelets and med info packets for the seat belt, were great. Never thought about it although we do have the ICE (In Case of Emergency on our phones. They say first responders will look there, but phones can be easily lost in an accident. I've made some travel pillows that fit around the seatbelt like that.

    Tired tonight with a headache, but think it's more the gloomy weather right now than anything else. I hope you get better soon Sedgly, illness can be just too much on top of everything else. Who is there to take care of us?
    • CommentAuthorSedgly
    • CommentTime4 days ago
     
    Sorry you are dealing with that Oakridge.

    The bulk of anger here is also for me.. but son2 is the person besides me who is here the most so Jim tries to dominate him.... usually after one of Jim's fits son2 won't come visit for a while...

    Im not sure how anyone dealing with this wouldn't get burnt out... I think it's inevitable...i'm no saint at walking away... sometimes I can do it easier than others.. and sometimes not at all...it frustrates me to hear people say ,"it's the disease" frankly sometimes I don't care what the cause is..the end result is the same..he's an ass..and I guess I've never been to good at not standing up for myself and just taking it...

    That being said, I also feel for him sometimes when he seems so upset and lost...even the anger makes me wonder just what he is feeling inside....

    Hope your weather clears and you can get the appointments done.. we warmed up yesterday to 10 but they say it won't hold...im really hoping spring comes early this year...
    •  
      CommentAuthorCharlotte
    • CommentTime4 days ago
     
    I agree, I am tired of usually reading all the time 'it is the disease, not the person' as if that makes it any easier, especially when this has been going on for years.
    • CommentAuthoroakridge
    • CommentTime3 days ago
     
    For some reason I can't get into our med ins online without clearing the history, which means I have to log in here every time. When I started reading I didn't realize it was from last summer, what a lot we have all been through.

    I do agree - it's the disease, not the person - is a little trite but it does help me when I'm ready to hit him over the head with something just to shut him up :) I say to myself, this isn't my husband. He would never treat me like this. This is a man who looks like my husband but doesn't act like him. I swear there are days I seriously think about letting him go ahead and do something stupid and I wouldn't have to deal with it anymore. Then today, it was a rough morning but we did get to the afternoon appt and it was very good news, his foot has completely healed so he can begin doing things again. I was tired but made Orange Sauced Chicken over rice for dinner, which he loves. Afterwards he not only fed the dogs, he let them out and back in and cleaned their feet. Then while I was taking care of some paperwork he cleaned up the kitchen. Tomorrow I might be looking for a big stick again but tonight it's almost like old times sitting here watching tv. I think I'll go to bed early before something happens to spoil it.
    •  
      CommentAuthorCharlotte
    • CommentTime3 days ago
     
    Oakridge - good to hear of the good news and pleasant evening.

    When clearing cache and history make sure 'clear cookies' is not checked too. It is when I clear cookies I have to sign into many sites again. Sometimes with this site, it takes a few times making sure 'remember me' is checked. Of course there are times when I don't and I have to sign in again.
    • CommentAuthoroakridge
    • CommentTime2 days ago
     
    You know Charlotte, I had completely forgotten about cookies. Thanks
    • CommentAuthorSedgly
    • CommentTime1 day ago
     
    Oakridge, I hope you have had a long break from looking for the stick....

    My moment came Valentine's day... he took a piece of white cardboard, I think an insert from a pair of socks, and spent quite a bit of time working on it... I didn't really think of it till after..that he was at his table quite a while....... he drew a heart, drew a ruffle around it and an arrow through it... wrote happy Valentine's day in the heart... then I love you ..with my name all in caps and signed his three initials.... and left it on the keyboard at my desk for me to find.....

    It thrilled me... ... he didn't call me "the little red haired girl" , didn't write any poem (he use to write the best, horrible rhymes lol)...... no gift aside from this.... it was the best... some place in his brain something connected and it mattered....

    We got another 5 inches of snow last night... Sunday we are supposed to warm up to 1.....I'm ready for spring....
    •  
      CommentAuthorCharlotte
    • CommentTime23 hours ago
     
    Sedgly what a great present.
    • CommentAuthoroakridge
    • CommentTime22 hours ago
     
    No stick needed today :) Actually he has slipped into a different phase - extremely quiet - not much conversation. I tell him we've already discussed that when he brings something up, he just says ok. I'm so glad you got a valentine!! How sweet; I can imagine how you feel. It's those little things that keep us going I think, knowing someplace inside him at least a part of the man we knew is still there. I bought myself a large bouquet when i came home Wednesday, told him they were to me from him because I knew he would have gotten them for me if he had been out. And he would, he used to send flowers to my office all the time.

    Years ago I had a major concussion and brain bleed. Lost my memory...etc...etc....was like i had a dictionary in my head that had slipped down a little, I would use words that sounded like what I thought I was saying but much different meaning. Going through the different phases while I healed led me to study the brain later. It was fascinating, for two weeks I never got sleepy, another time I never got hungry. I had to relearn things and I could remember where everything was in our old house but not where it was in our current house. The neurologist told me I would keep recovering for about a year, after that time, I couldn't expect much more.

    Say this only to describe I know there are areas in the brain that can work under the worst situations. Not sure what has brought about this change but it's nice. He's more patient with the animals, went out in the ice tonight to close the barn doors, it makes a big difference in keeping the heat in and we have a very large window that is subject to stress fractures, so try to always prevent extreme cold outside with heat inside. It is cold too, was supposed to snow but it started sleeting yesterday afternoon, all night and is still going. They say snow all next week. Was strange, I could hear it hitting the house but couldn't see it coming down out front. But in the back this morning, I was out with the horses and you could see it in the air. Everything is covered with ice - which I prefer to mud - if it wasn't so cold.

    Just got the news our middle son and his wife are coming back for a few days over Fathers Day, they live in northern Oregon. Then our youngest son and his wife are coming from CA in July. In August my youngest sisters grandson (she died at 63) will be coming back for a couple of weeks before he goes back to CA to start school again. He came last summer for two weeks and we sure enjoyed having him. My sister used to bring his Dad to our ranch to ride horses and see a different way of life, now the Dad is grown and wants his son to have the same experience.