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  1.  
    I agree its been quiet here, but now it's June so had to start a new thread.

    We have had a lot of rain and hot muggy days when its not raining. Tomorrow is supposed to be thunderstorms most of the day. This is the first year that I have not mowed my own lawn but I was gone all of April and will be gone the last half of July and most of August so hired someone to do it. He can hardly get it done because it has been so wet.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 1st 2018
     
    When I was posting on May did not even think about it being June already!!
    • CommentAuthorJan K
    • CommentTimeJun 1st 2018
     
    I've been feeling really down, and try not to post when I feel like this, but when I saw this video, it made me smile, and hopefully it might make someone else smile, too. (I even liked the music.)
    http://start.att.net/player/category/news/article/geobeats-curious_cockatoo_interrupts_a_traffic_camera_view-velephant
    • CommentAuthorbhv*
    • CommentTimeJun 1st 2018
     
    That is so weird. Charlotte just talked about that on the May thread. LOL.
    • CommentAuthorJan K
    • CommentTimeJun 1st 2018
     
    Sorry. I missed that post.
    • CommentAuthorNicky
    • CommentTimeJun 2nd 2018
     
    It's been 1 year today that I had to place my husband. Private residence for 5 ½ months, then 7 weeks in his first long term care & has been in his second long-term care since January. I can't believe it's already been 1 year since he's lived at home. I still miss him so much. I remember all too well, how I felt a year ago..... I'm in a better place today - not feeling great, but better than last year.
    • CommentAuthorWolf
    • CommentTimeJun 3rd 2018
     
    Sunday mornings usually, just like I said.
    •  
      CommentAuthormary75*
    • CommentTimeJun 4th 2018
     
    Wolf, I’ve puzzled over your last posting. Are you referring to a previous post, and I missed it, or forgotten it?
    • CommentAuthorWolf
    • CommentTimeJun 4th 2018
     
    Hi Mary, no the site was down Sunday morning. I had said some time ago that it's generally on a Sunday morning.
    •  
      CommentAuthormary75*
    • CommentTimeJun 4th 2018
     
    Wolf, I remember now and your reasoining, which made sense to me.
    I guess I hadn't noticed that it had been down this past Sunday. It takes us longer to get up here on this side of the country.
    It's 1:00 p.m. here now, and you're just heading into the kitchen to make your famous chicken soup for supper.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 4th 2018
     
    I wondered what he meant to. I did find it down and went on to something else.
    • CommentAuthorWolf
    • CommentTimeJun 4th 2018
     
    Actually, I'm still living on the fruits of previous labour. I freeze five soups at a time and they're big servings. I ran up an unusual bill for Chinese food last month though, where the fools agreed to deliver. I order a dinner for five and add a couple of items. It last's me three days. I did three rounds last month and even though the food (and the bill) are to die for, I'm Chinese'd out.

    I eat once a day which saves a lot of time, more of which I need like a hole in the head; have to watch my girlish figure. I'm thinking of starting a new canvas where I haven't painted in almost a year. I haven't gotten flowers yet though to put in the pots and garden. I'm being bad. It's a long, slow, snail crawl I can tell you and while I wouldn't dream of complaining, I'm impressed by the reality of deep wounds taking a long time to really heal. I truly believe only about half is her being gone because I think about half is how it happened, how long it happened, and the abundance of truly bad moments we managed to clock in.

    I don't give up and I don't stop working at it. I didn't know that about me before. If I had normal feelings that would make me feel good, but I'm still largely limited to analyzing what feelings like that would and even should feel like. It's continuing to improve at about the pace a glacier melts. Oh well, on we go.
    • CommentAuthorAug44
    • CommentTimeJun 4th 2018
     
    I recently read an article explaining that current caregivers and former caregivers of dementia victims can suffer from chronic grief. I think caregivers can experience a form of PTSD too. If I can refind the paper I'll post the link.

    Mary, glad to see you again here -- I don't think you've posted recently!
    • CommentAuthorWolf
    • CommentTimeJun 4th 2018
     
    Aug44, I believe both of those are true for some of us. Traumatic stress is certainly there depending on what episodes we go through, and I know some people have a very hard time letting go of the grief afterwards. While there is no measurement I'm aware of, it's clear that on average it takes several years to feel neutral again from reading the comments over the years. If you find those links I wouldn't mind reading them.

    I believe that part of the damage is caused by the strong grief moments we go through and aren't allowed to deal with. If we react normally, the grief of repeatedly watching them lose important pieces probably clinically would be defined as overwhelming. I remember the shock of realizing she had no idea how to use the phone. There are hundreds of those for them, for ourselves, and for the life we are losing. If we react normally it saps our power to stay strong enough to keep going. The fact is these boards document that caregiving is a lot like war. Moments of intensity with periods of relative calm; but with the sure knowledge that the enemy is getting stronger and will keep coming. When my wife passed, I had learned to deny almost all need or focus on myself for years.

    I've looked at it as survival, recovery, and reclamation and I'm not surprised that the road through that is comparably hard to the long road in. In some ways it's the same road we came from in the opposite direction. Not to our old lives but to our familiar selves in a new place.
    • CommentAuthoroakridge
    • CommentTimeJun 4th 2018
     
    I do agree with all of you about the grief of watching someone important to us decline in such a manner. My Mother died at 75 after 11 ys with AD, the last 5 in nursing home. I was sad, along with relief and numbness. My doctor told me it was quite normal to have those feelings because I had already grieved for my Mother. At each point in her illness I felt like I was losing more and more of her till she wasn't my Mother any longer. My sister died at 78, also after 11 yrs of AD, however her family did most of the caregiving as we didn't live close. But I can clearly remember the call from her one night, that instantly made me aware of the change in her.

    With my husband, I feel grief, sadness, anger, guilt - all of them. It is a much different feeling to go through this with him.Today was one of those days I actually wouldn't have felt bad if he fell off the tractor and got run over. He can't do anything like that, couldn't even get it started, but there is no reasoning with him. Of course he's never heard of anyone falling off a tractor and getting run over, then said I'd be happier if he did. He can't even use the riding mower without breaking it every single time. But there is no way to reason with him and no way to get his mind on something else. He just goes on and on, till I finally went outside and worked, then came in and took a tranquilizer and lay down till I could control my emotions. Tried to reason with him, tried to deflect some of his anger, till my own feeling of stress and helplessness was worse that ever. It's very hard to put into words how he is, doesn't wander, isn't violent, to acquaintances he seems normal for an 81year old man. He has no memory of how to do things but someplace in his head he must be able to remember doing them because he still thinks he can and gets furious if he doesn't get his way. It is beginning to affect people who have tried to be supportive since there is nothing you can do but ride it out. When I had that shovel in my hand today, I could understand how people could get to that point. As hard as it is for him to go through this, he occasionally mentions he has a little trouble with his memory :)...I feel like I am losing my life. As it goes on for years, we become different people, at least I have. I've no idea how I will feel if he goes first, nor any idea of what I will do. And, since I'm no spring chicken either I don't see my life being much different unless I sell the property and move to town where I'm around other people. We don't live close to family, and even my grandchildren are grandparents so I don't see that as an option.

    I believe it was Wolf who said we aren't allowed to deal with our grief - but it's still inside and comes out in various ways. Tonight, he is sweet and happy, wants me to watch TV with him, no recollection of what we went through today and is frustrated because he says he doesn't understand what's wrong with me :) I'll feel better in the morning, but then we start it all over again. I feel guilty that I only come here to vent my feelings but no one else has any idea of what we go through on a daily basis -- but reading about others problems does help me see it could be worse and fortunately I'm able to still take care of him.

    So thanks everyone for sharing your experiences.
  2.  
    I see we have spam again this morning. Sigh.

    Oakridge, we also had the issues with the riding mower--getting hurt on it, going into other people's yards with it, mowing half our yard and forgetting to do the rest, "fixing" it so it wouldn't run...you name it. It had to go in for service because he did damage it...I explained the situation to the repair guys out of his hearing...they took the mower in for "service" and then just didn't ever bring it back. I told him it couldn't be fixed and had to be junked. Then I had a lawn service mow after that. The lawn guys were kind and understanding...they were Hispanic, and when my husband would try to direct them and get in the way of their work, they were very nice to him--didn't make him mad-- but would pretend they couldn't speak English. Worked like a charm.
    • CommentAuthormyrtle*
    • CommentTimeJun 5th 2018
     
    Elizabeth, When Joan removes the spam, it reappears immediately, whereas when she lets it sit for while (as she did last time), there is a long break between spam attacks. For that reason, when she became aware of this spam last night, she chose to leave it there for a while.

    Wolf, I completely agree with you that only about half of our grief is about our spouse being gone and the other half is about how it happened, how long it happened, and the abundance of truly bad moments we managed to clock in. The latter is probably the worst, since as you say, it would be overwhelming to react normally to the horror of their illness and above all, we need to keep trudging on during that period.

    Oakridge, your husband seems to be at one of the worst stages of the disease - the "frustrated mechanic" stage. I remember how that made me want to scream. He couldn't accomplish anything, but insisted on trying to do it anyway and wouldn't let me help him. Also he became angry and demoralized because he felt like a constant failure. The best I could do was to distract him.
    • CommentAuthorAug44
    • CommentTimeJun 5th 2018
     
    Wolf, of course I wasn't able to find the article I mentioned! However, I came across the following while I was looking. I have not read them yet so I don't know if they are of any significance.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708697/

    https://www.lbda.org/phpBB3/viewtopic.php?f=13&t=908

    https://www.sciencedaily.com/releases/2008/03/080306220016.htm

    https://www.futuremedicine.com/doi/pdf/10.2217/1745509X.1.1.117
    • CommentAuthorlindyloo*
    • CommentTimeJun 6th 2018
     
    Oakridge, You don't ever have to feel guilty about venting here. It is often the only place we can vent. Spouse, family, and friends love us. But here everyone "gets it". And we need to vent to someone who really understands, won't judge, and does care. Vent away when you need to. :)
    • CommentAuthorWolf
    • CommentTimeJun 6th 2018
     
    I read them. The fourth link is by far the best although a bit of a slog. In it, on page 122, it puts up their result that 40-50% of caregivers get clinically significant depression while about 20-25% get major depression.

    There are two aspects to the contention of chronic grief. They are (of course) what chronic means and what grief means. Without using the word chronic, I have long contended that it's the duration that causes dysfunction we really become aware of more when we try to recover from the ordeal. In part this is like interviewing a soldier under live fire about how they're feeling being under live fire. Being in it is not an objective viewpoint to assess it from.

    It's in the identification of the state, in this case the word grief, where I have the greatest contention and for two reasons. One is that there are multiple, simultaneous states, and the second is that most of those states are changing in their own ways. That's comparable to calling something The Chicken Soup while constantly altering the ingredients.

    To illustrate, there is grief, sadness, fear, anxiety, and loneliness to grab a bunch of ingredients. Sadness for our partner and the feeling of loss are long term things. They change as gradually as they do genuinely. Grief often comes strongly some time after the events (which could be minutes or months) but it is also topic specific and trigger specific. Someone might be ok until a birthday or anniversary comes up. Anxiety is it's own family of things that can be case specific (the car won't start) or topic specific (what will happen) or an underlying condition and so on. Fear is felt by people faced with life changing events such as these both during and after where there are multiple forms of uncertainty within actual threats (financial for example or location). Loneliness is it's own form of gnawing reality where the separation from long term, core partnership and the existence in uncertainty deprived of core relationship needs, is also it's own topic.

    These and more run simultaneously where for some time any of them have sufficient force of power to create dysfunction, never mind numerous powerful forces at the same time. None of this includes the make up of each person and how their own characteristics wrestle with each of these forces.

    Then there is the chronic part. No one yet has demonstrated to me a studied and specified analysis of what that means. A long lasting problem difficult to eradicate says one definition. Fair enough, but chronic includes the meaning 'set in place' which should raise the question 'set in place understandably' or 'set in place where it doesn't have cause'.

    In some ways this is like diet experts. When experts argue for every point of the compass, what you know is that no one knows. Caregiving complicates grief and grief itself can either wail or exist in silence or be effectively invisible hidden from perception by something as simple as interpretation of the term.

    I'll give you some new terms. Chronic tourism. The feeling that you are a tourist of your own life. Personality separation. The schism from the life your personality identifies with. Entitlement denial. The unseen perception that you don't deserve to be fine or that it's wrong to feel fine or that it's a betrayal to them that we're fine. Off the turnip truck newbie. The condition of having no idea whatsoever how to fly solo. Identity separation. The feeling of not knowing who we really are.

    All of these are reactions to stressors. That's the thing to remember. The stressors are real and that's why the reactions are real. The truest application of the word chronic is that it's the stressors that are chronic.

    The thing about that is the same thing as our stupid perception of heroes. Heroes are sh*tting their pants while they do the heroic thing - otherwise they would just be reckless. We studiously avoid the demonstration that we are actually quite strong because we're feeling the opposite. That's normal; but, it obscures the fact.

    In my opinion, chronic grief is when years later the facts continue to hit with the same force. Not once in a very long while but whenever the realization hits. That is personality schism in my opinion and that person could use some help to find a way to let go of that and come over here.

    The vast majority of people survive this ordeal. I know this well and my heart bleeds for you because I know. What caregivers go through is truly heartbreaking. Yet, it is these gates that everyone must go through when the sacrifice is completed and there is only one person left to save. The Alzheimer's experience does not end when they pass. It ends when they apply their proven ability to endure to making Alzheimerspouse an experience of their past.
    • CommentAuthoroakridge
    • CommentTimeJun 6th 2018
     
    Wolf I love to read your comments. It makes me feel good to know you have passed through the fire and came out stronger. You have the ability to make sense out of all the gibberish we hear along the way.
    • CommentAuthorWolf
    • CommentTimeJun 6th 2018
     
    oakridge, that's both true and not true. I believe I've come out more, rather than stronger, and I'm still wrestling with it and so haven't actually passed through yet. The bad news is that I'm still hiding from my life, the good news is that I know that's true but I own it so bite me.

    I wrote that as a summary to Aug44's original comment about chronic grief and the links they provided. I have no wish to mis-represent that Aug44 was partially right in that I have at least parts of chronic grief. Unfortunately, without a manual, it's hard to tell whether I have an appropriate amount of chronic grief or whether I have issues outside a reasonable norm for my experiences and timeline. That's because no one has ever tried to establish a reasonable norm for recovery from an experience like this. I wish that were a joke.

    I believe that there are some geniuses who understand the access they have. I believe normal people can access similar insight when they get out of the way. The third part of that is I believe in jumping up and down when I think I say something decent but not as much as that self aggrandizement (wow! I spelled that right) is the surest sign of a fool. Thank you sincerely though. All feedback is craved. I mean appreciated.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 8th 2018
     
    He is lucky he is still alive or at least not kicked out! He comes walking into the house carrying the cat leash with the collar attached. I asked where the cat is. He says 'I don't know' - he has no memory of doing it not even a couple minutes after. Luckily the neighbors saw what he did and put their cat eating dog on leash in case the cat ran to the back as she normally does but I guess she ran to the front and who know where. That was about 5 hours ago - hopefully she shows up in the morning like normally. I know I should not be surprised or so upset but it really ticks me off. The cat has been a stress ever since we got her 10 months ago. But she also is a source of comfort for me. When she lays on my head at night purring it is comforting.
    I would rather get rid of the dog than the cat but if something doesn't change soon - like him placed - I will get rid of both of the animals.

    As much as I love him being gone, I may drop the Tuesday day care. He seems to be getting so tired by day 4 - tired and more confused. After letting the cat go and I got him to stop looking for him around other people's RVs, he said he was going to for a walk. Next thing I know he is looking for a key. He was looking for the key to the wood - there is a 2x4 laying on top of the concrete blocks.

    It is after 1, I should go to bed but the thought of laying in the same bed with him is revolting. I thought of sleeping on the floor but that would be hard and painful. Oh well, this is another day - maybe it will be better after I wake up. He will probably sleep until at least 11 if not noon, so can't do anything in the morning.
  3.  
    Charlotte, it sure sounds like he needs to be placed. As we all keep saying, We can't let the disease get the caretaker first. You are under a lot of stress! I know, I know, there are a lot of other factors out there. Money is always first, how long will he be needing services, and on and on.
    • CommentAuthorlindyloo*
    • CommentTimeJun 8th 2018
     
    Charlotte, I hope your cat came home.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 8th 2018
     
    Yes, I was woken up at 2:30 with the sounds of cats growling. Whatever, whether that other cat or what spooked her cause she came running in but kept looking back. Thankfully she was not hurt. Good thing I am a light sleeper.

    I know he needs placed. I guess I need to go visit those facilities that take Medicaid. Maybe they can give me some answers how to proceed.
    • CommentAuthorbhv*
    • CommentTimeJun 8th 2018
     
    I am relieved the cat got back unscathed.

    Been weird coupla days here. I was trying to figure out when some things happened and made the mistake of reading my journal. My friend gave it to me back in 2015. I wrote lots of stuff for almost two years. It is a horror story. I finally quit writing in March of 2017 because it was just too repititious. Sometimes I did come up with solutions. It did help me accomplish a.lot of things around the house that needed taking care of. But reading it made me sad. Kind of amazing how much ground he has lost since 2015. I asked him what things are like for him now and he is happy. He likes it here. He loves me and wants to stay here with me. Made me even sadder.

    Tried to go pick up something I had ordered yesterday.afternoon, but he stunk to high heaven. Had pooped in his pants. Apparently completely oblivious. Refused to change clothes. So I waited awhile and tried again. Still no luck. Spraying air freshener all over the house. Finally the third time we got it done, but needed a.shower.

    In 2016 I remodeled his bathroom. Didn't get a hand held.shower attachment because I.was worried he would have a hard time with that much change. He has been having more difficulty following directions and getting clean so I ordered a hand held attachment and a shower chair. They came yesterday but I hadn't installed it yet. Interesting. It was almost impossible to get him to stand under the water to get the soap out of his hair. So I installed the new shower heads today.

    Weren't we just saying if you think it might be time.for whatever..... it is way past time?

    That was after going to pick up a new recliner for him this morning - because after finally getting him.changed yesterday the traffic was a.nightmare. Set up the recliner. It operates the same way his old one does but he can't figure out the new one. Good grief. Now I don't know if I should return the new one or not.

    So that's why I installed the shower head. (And now for something completely different...) While doing that, noticed water pooling on the floor next to the toilet. What the heck? Finally realized the toilet tank had cracked. No idea how. Don't think I touched the toilet. Of course it is Friday afternoon. But I looked it up at Home Depot. Did you know you can replace just the tank? Home Depot had a.universal tank for only $32. Good thing I looked online too cause it wasn't at my usual store.

    So we.made another trip out amongst 'em on a Friday afternoon. Oh joy. He was.happy to watch tv while I installed the new tank. Holy Mackerel. There's a bit of a leak at the inlet, but I will fiddle with that tomorrow.

    What a day.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 8th 2018
     
    If you don't like the chair, I would take it back and let him use the old one.

    Good job on toilet and shower head. I love a handheld shower. After having one the last 14 years living in the RV, when I use a regular shower with a regular shower head I don't feel I get rinsed well.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 11th 2018
     
    Start of a new week. After the high in the 60s on Saturday, 70 yesterday we are forecast to be at 100 by this time next week. I say forecast because originally they had for Saturday - just checked not until Monday. Guess summer heat will eventually come. Have enjoyed the summer so far -a few days in the 90s but mostly 80s. I have loved the last week because I can have the door open even though hb was chilly - he just put his jeans and sweatshirt on while I am still in shorts.

    I will watch this week. If by Thursday he continue to appear wiped out, I am considering dropping Tuesday day care. Yesterday I was enjoying him not being up - let him sleep until 1. Friday I let him sleep until noon, Saturday 10. As a result, even with the melatonin he could not go to sleep until late and was tired this morning.
    • CommentAuthorpaulc
    • CommentTimeJun 11th 2018
     
    I spent this weekend in NY for my niece's Bat Mitzvah, my son accompanied me. 5 hour drive each way. We very nice to see family and get out of town. My wife said she had a panic attack on Saturday because I wasn't there at the expected time, she remembered an hour later that I was going to NY and not visiting her. She sounded fine on Sunday. One of her sisters visited her on Sunday and had a good time.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 11th 2018
     
    Good to hear you and your son had a good trip and father/son time.
    • CommentAuthorbhv*
    • CommentTimeJun 13th 2018
     
    I have a jewish niece and nephew. Their Bat and Bar Mitzvahs were the most beautiful ceremonies I have ever attended.

    I played 9 holes of golf yesterday. It was slow going and I ended up playing with a young man from Canada. He played from the expert tees. He was such a nice guy. We had pleasant conversation and cheered each other on.

    Hb surprised me at day care. I was trying to help him find a seat since everyone was busy when we got there. He turned to me and said, "I'm ok." And waved goodbye. OMG. Usually he gives me a dirty look when I leave him there. And this was after I got him to take a shower before we left. And,.yes, the hand held attachment made things much easier. And, NO, I don't tell him I played golf!

    Oh yeah, on Monday I returned that recliner to the store. You should have seen the goat rope trying to get him to help me lift things and get it back in the box and get it into the pickup truck. He could NOT understand any directions. He wouldn't help pick things up. Then he would move things back to where I just moved it from. OMG. Somehow I got it into the truck by tilting it and he was finally able to push a little. I cant believe I did it without getting hurt. Of course then I was cursed out in every way imaginable because he couldn't understand what to do!

    Sometimes I experience these stressful days as physical pain. Now I am trying, unsuccessfully, to just shut down emotionally.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 13th 2018
     
    Monday - bad day! Tuesday - good day. Tuesday - better day. May the rest of the week be better days.
    • CommentAuthorbhv*
    • CommentTimeJun 13th 2018
     
    Wed disaster. Wouldn't cooperate to change clothes. Wasted half hour waiting to try again. Balls covered in dried up poop. Good grief. Had to do a shower again. Now the new hand held is not recognized and a POS. Finally got him dressed and out the door.

    But I didn't have anything to do so just came home and worked on the ravine weeds, took apart the old toilet tank to save working parts just in case. Played piano for a bit and took my own shower.

    Picked him up. WTF am I doing all this driving for??? He is in different clothes. (We keep spares there.) Apparently pooped some more. They washed his clothes, but dryer was broken. Got home and asked if he was comfy in those clothes or if he'd like a shower. I got cursed up one side and down the other and round about again for good measure. So slept all afternoon and not speaking to him. Fed him supper. Apparently the depakote honeymoon is over.

    Why, exactly, am I staying here?
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 13th 2018
     
    Bonnie, sorry today was a day from ****. (((hugs))) Hope you get a good night sleep.

    found the list of places that take Medicaid. Maybe I will call tomorrow to see maybe tour the places and see if anyone will explain the process.
    • CommentAuthorbhv*
    • CommentTimeJun 14th 2018
     
    That's a good idea. I toured one place recently. Can't stop thinking about it. I recommend don't overschedule yourself. It took twice as long as I thought it would. I was an emotional mess for awhile after the tour. Pace yourself.
    ((((Hugs)))) to you too.

    Amazingly after such a.long nap yesterday I went straight to sleep. Noticed he was up early, but he somehow managed to turn on the tv ALL BY HIMSELF. So I didn't get up til later.
    • CommentAuthormyrtle*
    • CommentTimeJun 16th 2018
     
    The June 15 Washington Post has an excellent article called, "The Five Myths of Alzheimer's Disease." Among the myths is the mistaken belief that early detection improves treament. Even the Alzheimer's Association spreads this falsehood. In fact, with the current state of medical knowledge, early detection has no effect on disease progress.

    I'm not able to provide the link but you can probably find it easily. Also, it's short enough to cut and paste.
    • CommentAuthorbhv*
    • CommentTimeJun 16th 2018
     
    Here's the link. Good article.

    https://www.washingtonpost.com/outlook/five-myths/five-myths-about-alzheimers-disease/2018/06/15/54338112-6fdb-11e8-afd5-778aca903bbe_story.html?noredirect=on&utm_term=.fd06fb66d773
    • CommentAuthorbhv*
    • CommentTimeJun 16th 2018 edited
     
    However, the article doesn't mention that you might want to have the 4-6 hour neuropsych testing to determine which type of dementia when the person is still able to participate in that testing.

    Back when hb was diagnosed (early 2015) the crappy neurologist didn't bother to refer for that testing. Apparently it would have been helpful in picking medications to control behavior issues. We are stuck with trial and error. Scary process since the meds have potentially fatal and/or potentially irreversible side effects. Reading the stuff made me seriously wonder who would take these meds if they didn't already have a terminal disease??? Some of the lovey dovey spouses who crave even five more minutes might not want to try these meds.

    Even so, the testing could pose a dilemma because not every one develops behavioral issues so it could be wasted time and money to do that long, involved.testing.

    The other thing they didn't mention is Aricept. It is supposed to slow the cognitive decline, but, I was assured by several health care professionals that it doesn't prolong the overall process. That doesn't make any sense to me, but I agreed to let him take the Aricept generic. He has been on it for about three years. (He didn't tolerate namenda.) I stopped it for several months because I wondered if it was causing the diarrhea, and didn't notice any difference. Restarted it and didn't notice any difference. Last month asked the geriatric psychiatrist about it and she recommended continuing it. I don't know if I should. We both watched the process with his mother and both agreed we didn't want to prolong that if it happened to us. Well here we are.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 16th 2018 edited
     
    The AD drugs only work for 30% or less. If they work they only allow them to stay cognitively functioning longer while the disease rages on. Aricept has been known to cause some to become agitated and/or violent. It has also been known for some to calm them down.

    My question as always been: how do you know if the AD drug works? You don't know unless you take them off. How do they know it might slow the disease down? You don't because 'if you have seen one Alzheimer's you have seen one'. My FIL lived almost 25 years - never took any drugs for it until after my MIL died and he went into the VA memory care where they put him on Namenda. At home they had their tea 6 times a day and she gave him vitamins I think. Did the Namenda prolong his life - the last night years of wandering the hallways (went down fast once he was admitted) or would he have lived that long without it? With cancer you can say the lived longer because the chemo killed the cancer cells. Or they only have so long to live because cancer is for the most part predictable. With Alzheimer's, FTD, LBD, etc. there is no predicting.

    Didn't read the article - won't let me without turning off my ad blocker or subscribe.

    I think the long testing is good. My husband showed very little signs - it was his not hearing me that got him there. But the testing showed where the damage had started but he had been able to cover up. It was those test results and family history that led to the diagnosis. His MRI just showed shrinkage normal for age.

    I stopped buying him his hard candy - been out for a week. When he comes home from day care he fixes himself a sandwich - says he is hungry. So not sure how much of his lunch he eats but the candy was killing his appetite. I stopped buying it because I got tired of finding candy wrappers every where including out in the grass.

    Got the fencing wrapped around the porch and across the side of the MH hoping the cat will not being getting tangled so much and stay out from under the MH.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 16th 2018
     
    Our son called today while he was driving stuck in traffic. We talked well over an hour. Before hanging up I told him to have a good father's day. He never bothered saying to tell his dad to which is really no surprise. I honestly think he has written him off already. Same with our daughter.

    I have been working hard to keep any programs or commercials that talk about it because he was getting upset last week. Kept asking about his parents and sister. I told him they were partying in heaven together along with my mom, dad and sister waiting for him to join them. That seemed to agree with him better than saying they had died.
    • CommentAuthorbhv*
    • CommentTimeJun 16th 2018 edited
     
    That's a good one, Charlotte. Partying in heaven.

    I took a day off today. Sat here with hm watching the golf US Open at Shinnecock Hills on Long Island. Feeling a little like in heaven thinking about home,.esoecially when they did aerial shots. They had an interesting spot about the Montauk lighthouse narrated by Joe Namath. He did good til the end when he said it was in Longeh Island. He is from Brooklyn or da Bronx I guess. People from Long Island don't use that hard 'g' sound. LOL.
    • CommentAuthorbhv*
    • CommentTimeJun 17th 2018
     
    Charlotte, I know you said you have a list of medicaid places. This morning on alzconnected someone put a link to a database of medicaid nursing homes you can search by zip code. Might have some reviews too.
    • CommentAuthorbqd*
    • CommentTimeJun 17th 2018 edited
     
    I haven't been on this site for almost 3 years, since just after I placed my husband. It feels like coming home to see so many familiar names!
    • CommentAuthormyrtle*
    • CommentTimeJun 17th 2018 edited
     
    Hi bqd, It's nice to see your name pop up again. How are you doing? Still living in Quebec?
    • CommentAuthorbqd*
    • CommentTimeJun 18th 2018
     
    HI myrtle*

    Yes I still live in Quebec. A lot has happened in the last 3 years both with hubby and myself and I will get into it all eventually.

    We are expecting thunderrstorms today. I'm glad they stayed away yesterday when the kids were up. They combined a trip to visit their Dad and a bbq and swim with their Mom. Lovely day!
    • CommentAuthorNicky
    • CommentTimeJun 18th 2018
     
    bqd - I also live in Quebec- what city are you in? I'm in Gatineau. Also expecting thunderstorms. The sky is very dark now & I can hear thunder in the distance. Going to rain very soon. I'm sitting on my front porch - won't be here much longer.
    • CommentAuthorbqd*
    • CommentTimeJun 18th 2018
     
    HI Nicky. Nice to meet a fellow Quebecer!

    I live in Ladysmith, up in the Pontiac, north of Shawville. My kids call it the middle of nowhere, ha ha.
    The rain came through shortly after my previous post. It got very dark and rained quite heavily but luckily no wind.
    And the severe storm watch has been lifted.

    So now it will be just heat and humidity and bugs!
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 18th 2018
     
    So glad the weekend is over and he is at day care. The neighbor made the comment I sure was yelling at him a lot while doing the fencing. I guess my voice was loud but not yelling. Her husband is on the graveyard shift this week so was sleeping - hope I didn't wake him up.

    Cat is not happy she can't go under the MH or the porch. I thought I had it blocked off with concrete blocks so she could not go under the steps but she found a way. So I compromised by removing one brick so she can enter from one side. It is a good hiding place for her.

    Good to hear from you bqd. You are right, this is more like 'family' than many of us have. We have had winds and rain the last few days - very uncommon for the desert in the summer. Today is 70 tomorrow forecast 90 and in the 90s for the next few days. I have enjoyed the cooler summer because I can leave the windows and door open during the day.
    • CommentAuthorNicky
    • CommentTimeJun 18th 2018
     
    bqd - I live in Aylmer section of Gatineau - so I'm probably about 1 hour or so from Ladysmith. I haven't heard of Ladysmith - we moved here from Ontario 5 years ago & I don't drive very much. But I know Shawville & my daughter has a cottage in the Pontiac - not as far as Shawville - about 6 - 8 minutes passed Luskville (going towards Shawville).

    With this humidity, there are certainly bugs! More in your area I'm sure - I think it's cottage country where you live?

    Is your husband in long-term care in Shawville?