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    • CommentAuthorRodstar43
    • CommentTimeMar 18th 2018
     
    i cannot finf and easy discription for my wife..
    9 yrars short and long tem memoy shot, talk ok shot term, mmex score 6, cognitiveability shot, bath self, dress self, continents. disoriented, no good reasoning.

    hass simple partial sisures, has angiosarcoma

    alz or vasula dementia or does ir matter?
    •  
      CommentAuthorCharlotte
    • CommentTimeMar 18th 2018
     
    It really doesn't matter - they are all basically the same. The pathway may differ a little but the end result is the same - death.
    • CommentAuthorlindyloo*
    • CommentTimeMar 18th 2018
     
    Rodstar43, It really does not matter. The progression of both is the same. The only way to find out for sure is probably with an autopsy after death, something I chose not to do for my partner. It was too much to deal with that on top of everything else. I always assumed she had vascular dementia due to her medical history but Alzheimers' is what is written on her death certificate. For all I know it could be either or both. It sometimes is both.
    • CommentAuthorRodstar43
    • CommentTimeApr 17th 2018
     
    can you ask for an autopsy and if you have to pay how much are they?
  1.  
    I just deleted the post I wrote. I thought that sharing the information was useful and requested even though it was painful to have to recall. I am now thinking it was a waste of time.

    IMO this site has become dysfunctional and is being neglected to death.
  2.  
    edit
    • CommentAuthormyrtle*
    • CommentTimeApr 20th 2018 edited
     
    Hi marche, I thought your post was informative and interesting but saw no need to say anything about it. I am sure it was painful for you to recall and it was kind of you to offer that information to Rodstar. I don't know if he read it or not.

    As far as the website goes, I agree. I am going to stop emailing Joan about the spam.

    Marche, I have valued your friendship here. If this site dies, I'll miss sitting in the shed with you and listening to you talk about science and quote Shakespeare.
    • CommentAuthorJazzy
    • CommentTimeApr 21st 2018
     
    IMO

    It has evolved into a widows chat site and that is good for the widows who still need it but for me I just update once in a while.
    Once you no longer have a dementia partner at home then you need a different kind of support. It has been months since anyone put anything on the in care stickie.
    Maybe it has run it's course and need something different and I think Joan is working on that.
    When I first joined there were so many people going through some very difficult care problems but that seems to have changed and maybe the need is not there anymore. Remember things have changed and there is a a lot more help available now in our areas.
    • CommentAuthormyrtle*
    • CommentTimeApr 21st 2018 edited
     
    Jazzy, You seem not to have noticed that what is holding this site together are the efforts of the W&Ws to welcome new members, to offer encouragement and advice to those who are still in the trenches, and to notify Joan of the constant spam attacks. Although most of us whose spouses have died do not "still need" this site, we are very grateful for the help it gave us when we did need it and want it to continue for the sake of others who need it now. If the W&Ws stopped posting, who do you think would post?

    To my fellow W&Ws. No good deed goes unpunished.
    • CommentAuthorbhv*
    • CommentTimeApr 21st 2018
     
    Awhile ago, when there was too much silence I started posting even though I didnt think I had a valid question. I was just lonely. I was astonished at the wonderful responses that were more helpful than I could have dreamed.

    I didnt ask a.question, per se, but the W&Ws heard my questions as well.as my plea for human discourse.

    I would sorely miss Marche laughing at the image of me in my combat boots with new purse combatting the weeds on my hill. I go to Myrtle's shed every now and then (in my mind) for a.cuppa tea and to just listen to the birds.

    I dont know what I'd do without the Christmas Lodge and the Cottage on the Lake. Right now I am kind of shell shocked and having trouble communicating. I saw Lindylou and Wolf were there, but I couldnt get there. That happened once before. A mental block where I am too keyed up to relax. But it still helps just knowing it is there.

    I would totally understand if the W&Ws decided its not worth the trouble, but sure do appreciate the support of those who are able to continue their support.

    I find myself telling care providers and other friends things like, well my friend Charlotte says.... or my friend Lindylou taught me this.... or Mary75 did this. Oh and elizabeth got down and dirty and taught me how to handle the depends business! And I like exchanging Air Force stories with Rodstar.
    • CommentAuthorbhv*
    • CommentTimeApr 21st 2018 edited
     
    Oops I went off topic.
    Re alzheimers or vascular... Rodstar, I went to a class at the VA Geriatric clinic and they said it is important to know which type of dementia. They said with vascular there are some things that can be done to stop the progression and some even improve. With Lewy Body some drugs given to manage behavior problems or other psych issues are dangerous, but they work for Alzheimer type.
    So if you suspect vascular you might want to see geriatric psychiatrist to get that 4-6 hour testing which can help distinguish which type. Sounds like your wife could.participate in that testing. Based on your wife's continued capabilities it mught very well be vascular. Apparently the drugs used for that are different. I mean drugs other than Aricept and Namenda.
    At the class my hb just sat there with me even though they were talking about dementia and alzheimers which nirmally would send him into a raging bull attack. But since his name wasn't mentioned I guess he didn't see any relevance to him. The psychologist suspects that he would not be able to do the 4-6 hour test. He can't even do the mini mental status exam. Last doctor scored him a 1. But from the beginning I was reading about the types and there didn't seem to be any reason to suspect anything other than Alzheimer's.
    I had been wondering if I should have requested an autopsy of his Mom's brain, but another thread explained that process. I don't think I will bother to do that either.
  3.  
    I continue to read the postings and to participate because I am looking for a way, if I can, to help those who are still in the trenches. Most people here end up placing their spouse...which is usually necessary at some point...but I was able to keep my husband at home until he died. I am 25 years younger than he, had 40 years nursing experience in both hospital work and home care, and had Hospice at home for the last four months. And it just about killed me. If my experiences of coping physically, financially, emotionally, and spiritually can help someone else, then I'm happy to share. I try not to come on just to chat, but to make a contribution. I do feel that I've made close friends on this website, but I'll communicate with them by email if I just want to chat and be social.

    Maybe some people feel that the Cottage on the Lake and the Christmas Lodge are silly, and part of the "just chatting." But I think they are escapes, refuges, wonderful places to just virtually be able to relax and re-charge.

    One nice thing about this website is that we have been able to keep it a "no-judgment zone." I hope that continues, because caregivers and survivors need support, wise counsel, the occasional knotted rope tossed out to hold onto...but not criticism.
    • CommentAuthorRodstar43
    • CommentTimeApr 21st 2018
     
    bhv, thanks for the information. Right now I am thinking mix but, I can see the cancer spreading. The angiosarcoma spots are now on right cheek too. just in last two weeks it has grown from half inch diamenter to a quarter size. there is a spot above left eyebrow too. So, the cancer may win. Who knows whats happening inside. At least no pain yet. Hospice in mix now so meds are harder to change now. They are focusing on the cancer but, i live with the demetia.
    • CommentAuthorRodstar43
    • CommentTimeMay 13th 2018
     
    Further development is occuring in my DW's dementia journey. For a couple of years i have thought ALZ end of stage 5 but not incontinent. Lately, she has completly disassociated with who she is. To the point of feeling guilty for us living to gether. Next week we will have our 56th anniversary. She is experiencing extreme anxiety and gets frighten easily. She is functional but, now i have to watch her dressing more. I have to reminder her to bath. I am not worried which it is as her cancer may trump whatever dementia she has. Any thoughts anyone?
    • CommentAuthormyrtle*
    • CommentTimeMay 14th 2018
     
    No advice, Rodstar, but lots of moral support. I think you're right to just let things take their course. As far as incontinence goes, I think some people experience this early in the course of the disease and others remain continent until much later. My husband did not become incontinent until a very late stage, which made things a lot easier for all concerned.
    •  
      CommentAuthorCharlotte
    • CommentTimeMay 14th 2018
     
    It is not uncommon for them to forget you are their spouse. Some, seems women more than men, will go as far as not letting you sleep in the same bed with them or even the same room. So the guilty, feeling you might be living in sin (for those of us who believe that way), is normal. It has nothing to do with stages although might be in later stage. You must remember it all depends on what part of the brain is being affected and dying. As for incontinence you never know as myrtle said. My mother was early on, my FIL was continent until he was placed after my MIL died. I often wonder at first if it starts with them not remembering or knowing where the bathroom is, then goes downhill from there.
    • CommentAuthorNicky
    • CommentTimeMay 15th 2018
     
    Charlotte, I agree with incontinence starting with forgetting where the bathroom is, then goes downhill from there. That's how it was with my husband. At the beginning it wasn't really incontinence, it was more forgetting where the bathroom was, then once in the bathroom, didn't know the difference between the toilet, sink, bathtub. I had to make sure I was with him every time he had to go. I watched him closely during the day, but at night I couldn't sleep very well, because I had to make sure I heard him get up - a couple of times I didn't hear him get up(even though he was sleeping right beside me) & he was peeing on my mat in front of the bathroom sink - at least it was in the bathroom & it was only pee - it could have been on the hardwood floor somewhere else in the house. And the nights got worse when he'd stay up at 2:00 am, because I couldn't go back to sleep for fear he'd pee God knows where in the house. So, I put a Depends on him for the night, but at that time he still knew he shouldn't dirty his underwear, so he removed the Depends. But, I know everyone here knows all about that....
  4.  
    Here is an interesting article about Alzheimer.
    This is a very scary illness. Imagine forgetting everyone you love before dying. Being forgotten by some you love also hurt.

    Does Alzheimer’s Really Start In The Hippocampus Of The Brain?
    https://www.evolving-science.com/health/does-alzheimer-s-really-start-hippocampus-brain-00657
    • CommentAuthormyrtle*
    • CommentTimeJun 11th 2018
     
    Hello sophiewilson, I just saw your message, which got lost in all that spam. It looks like you are new to this site. Welcome. Yes, this is a very scary illness and so hard to live through with your spouse. It sounds like you've had experience with it. We all understand here. Does your spouse have Alzheimer's?
    • CommentAuthorDan
    • CommentTimeJun 19th 2018
     
    My wife was diagnosed with dementia a little over 4 years ago -- I knew that there was something wrong long before (at least 2 yrs) that but also knew that there was not much that could be done. I worked as a Service Coordinator for in Senior HUD buildings and saw symptoms. My wife is now in a nursing home for the last 18 months. They consider only palliative care at this time. She cannot walk or talk, feed herself or use the toilet. Rarely opens her eyes yet she often knows that I am there. When she understands that I am there she tries to get the one hand that works out from under the covers and extends it in front of her for me to take. She then draws my hand down to her. She gets anxious when I try to leave -- hours later. She was turned the right way in bed 2 days ago, I was bent over in the chair but I put my arm around her and just held her and held her hand for several hours until she went to sleep. Other times she goes a couple of weeks seemingly not knowing I am there. I just try to give her whatever she needs -- but I can't do much.
    • CommentAuthorlindyloo*
    • CommentTimeJun 19th 2018
     
    Welcome Dan. Hope that you find the support that I found on this website. Others will be by to greet you soon.
    • CommentAuthorbqd*
    • CommentTimeJun 19th 2018
     
    HI Dan, welcome!
    I just returned to this site after a three year break. I didn't feel I had anything to offer and I had no issues with the facilities my hubby was in.
    But things change. Sounds like your wife is in much the same state as my husband. End of life care. He rarely knows me but I think he recognizes my voice. He spends his days in what I call a stroke chair, clenching and unclench ing his hands. Today when I visited I was able to hold his hand. He forgets to swallow and has started to forget to breathe.
    After 10 years of dealing with this disease, it will be a blessing when he draws his last breath. The man I married is long gone!
    • CommentAuthormyrtle*
    • CommentTimeJun 19th 2018
     
    Hi Dan, What you are doing for your wife is exactly what she needs. Having lost my husband 15 months ago, my heart goes out to you. I hope you will find support on this site and continue to let us know how you are doing.
    • CommentAuthorJazzy
    • CommentTimeJun 20th 2018
     
    bbq

    I understand exactly what you are saying in your last sentence. My guy still presents very well and can express himself very well if he types it out but he can't get it from his mind out his mouth. His is mostly behavioural and the man I married is long gone. He causes a lot of problems for the staff and now my son has taken over the contacts with the staff as Dh was not happy with my being "BOSS" and was very abusive and controlling. It has taken a lot of stress from my life. His balance is going and he sleeps quite a bit now. They think he has had another incident, like a few small strokes.
    It's hard to watch. 18 years now. I took a break as well from this site but as you said ' things change.

    Hugs Jazzy

    Welcome Dan. Get all the info you can. Educate yourself and be kind to you.
    • CommentAuthorRodstar43
    • CommentTimeJun 24th 2018
     
    Hi Dan. My wife was dianosed in 2009. She now has cancer. Last three weeks she really start downhill faster. We live here in an assisted living facility. Ther are 3 other men in my shoes. I am the youngest. Only married 56 years. All are suffering. Seems some proceed faster than others. I have got my wife up to an 8 hour day care like place in our facility. The stress was causing chest pain. We all do our best by our wives. It is hard duty for everyone including men.
    So Dan, welcome, share your burdens and learn from others.
    •  
      CommentAuthorCharlotte
    • CommentTimeJun 24th 2018
     
    Rodstar - so glad to hear you are getting some respite from her. It probably is doing her some good too.
    • CommentAuthorbhv*
    • CommentTimeJun 25th 2018
     
    Oh Rodstar that is fabulous that she can be in daycare.there!!! I am so happy for you.
    • CommentAuthorRodstar43
    • CommentTimeJun 25th 2018 edited
     
    Had to do something. Strong stress pain began ocurring a week ago. wife sinking faster. Stress is accumaltive. I know the signs, had to do something. Getting help. Decision to make it permanant is coming soon. Survival mode. Thanks for concern.
    Richard
    • CommentAuthorlindyloo*
    • CommentTimeJun 26th 2018
     
    Rodstar, keeping you in my thoughts and prayers. You too, bqd, and you too Dan, if you are still coming to this site. The community here is supporting you all.
    • CommentAuthorbqd*
    • CommentTimeJun 26th 2018
     
    Yes I still come to the site, lindyloo*, several times a day. I don't alwayspost if I have nothing to contribute.
    Had sort of a funny but shocking experience today.
    I have posted elsewhere that my siblings and I are not close.
    Well, today I got a sympathy card in the mail from my sister. Coul she not wait until DH passes away, or send a thinking of you card? I find it quite funny now that she jumped the gun. Rumours of his demise are greatly exaggerated!