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    • CommentAuthorOwl
    • CommentTimeJul 17th 2016
     
    My wife and soulmate of 54 years (Aug 25 2016) was diagnosed first with Alzheimer's and then later with e body dementia (hallucinations and belligerency). She showed signs of dementia when she was 67 (she's now 74). I took care of her at home until January 2015. She was kicked out of two places because of behavior but the third place was able to deal with her. Unfortunately, the fall of 2015 found her with a UTI and she returned from the hospital with a resistant form of E. coli. Her immobility during the next two weeks resulted in a DVT (blood clot in left leg). She is now confined to a wheel chair.

    I still go home at night and cry for the life that we have lost. My kids and grandkids don't seem to understand my emotions and I have a hard time expressing or talking to them. The one that really hurt was when one of my son's daughters was getting married he asked me not to bring her to the wedding. I also have trouble with many of our older friends not visiting her or me. I miss social activities and can't seem to figure out how to get involved with other activities. Especially at night, when the loneliness is so excruciating. I usually stay busy during the day running errands and visiting my wife. It's the night that I have trouble.

    Anyone have any suggestions?

    Owl
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      CommentAuthorCharlotte
    • CommentTimeJul 18th 2016
     
    Welcome Owl. Sorry for the reason you joined us but glad you found us. All of us have or are experiencing much of what you are going through. Not only are you dealing with the Alzheimer's problems but the other medical problems she has. My husband is still home but he does go to day care 3 days a week, so the nights I can't exactly identify with yet. Others who have will be here soon.

    Feel free to keep 'venting' here all you want. This is a safe place to do it.
  1.  
    Hello, Owl. My husband died almost two years ago, but I remember vividly going through experiences similar to yours--the family not really "getting it" and friends exiting stage left are all too common. Sigh. Here's my wedding story: One of Larry's great-nephews was getting married, and we were invited. It was out-of-town but driveable, and I made some effort to help him get ready, put together a nice wrapped gift to go with the money envelope, etc. , and get ourselves down there. It was a four-hour drive from where we lived-- two hours north of Manhattan-- out to Long Island. The church wedding itself was OK, but when we arrived at the reception, it turned out that we were not seated with the family--we had been put way in the back in a corner with strangers and with another distant in-law who had obvious health problems. Obviously the thinking was that with Larry's Alzheimers (and while ditsy, he certainly could have functioned adequately with his immediate family--sister and brother-in-law were there)...we were just beyond the pale, I guess. Dementia need not apply. Anyway, very, very hurtful. It was so clear that the invitation we were so excited about had only been sent as a courtesy and as an excuse for them to get another gift--we were not really wanted or expected at the wedding. (The money gift was $300. I put the envelope back in Larry's inside suit pocket and just gave them whatever the wrapped gift was--I don't even remember--a salad bowl or something. Larry was still sharp enough to agree with me that those rats were not getting the three hundred dollars!).

    Others will be along to welcome you, I'm sure. You will get understanding and support here that you won't find anywhere else.
    • CommentAuthorRona
    • CommentTimeJul 18th 2016
     
    Welcome owl I am just moving my wife into care this week and realize what a change this will be to both out lives. This is a great place to share whatever you want no judgements here just people who understand what you are going through. Many have gone befor us and there are many coming right behind us there is a great deal of understanding, information and compassion here.

    so come often this has been a life line for me. Good luck
  2.  
    Owl, sorry you have joined all of us here on our journeys through this disease, but glad you found us all...You will find all of us understand exactly what you are going through...I placed my husband almost 6 months ago and his adjustment was almost seamless, he appears to be fitting in with no issues at all, not sure he realizes he had a different home at one time sadly...Adjustment for us caregivers I believe is another story entirely and I don't have any words of wisdom on how to deal with the loneliness as even after 6 months of being "on my own" so to speak, I have yet to find any sort of routine myself and consider it a win by virtue of putting one foot in front of the other and making it to the end of each day...Others have walked this road and many are still on the journey, but you will find all of us here to try to help you along...as Rona said, this place is a lifeline for us all, a wealth of information and suggestions on just about every situation that could arise with this disease and of course a safe place to vent, cry and scream!!!!
    • CommentAuthormariposa
    • CommentTimeJul 22nd 2016
     
    Hi Owl,
    My soulmate went through a similar situation - got blood clot in leg, had seizure and broke bones and never recovered ability to walk, so wheelchair bound. Due to behavior, thrown out of one home, sent to geriatric hospitals three times. Diagnosed at 59 (in 2007) with AD and he is going to be 69 this year. I still have overwhelming sadness - its ongoing grief. I think I am depressed and have insomnia where I often can't go to sleep until daylight. I am still working, but work for myself so try to work around that. I have been "on my own" for 6 years.(He became combative with me). Friends have fallen away and as 29Scorpio said, it is a matter of making it through the day, currently. I am glad you found this board - it is a lifeline.
    • CommentAuthorAdmin
    • CommentTimeJul 22nd 2016
     
    Owl,

    Welcome to my website.I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.

    The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member".

    Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page for new blogs; news updates; important information. There is also a search engine at the top of this page for you to look up every topic we have discussed in the last 9 years.

    Please excuse the condition of some of the links in the Resource Section and the lack of new blogs. I am currently in the middle of a huge website renovation, and everything will be cleared up and in working order as soon as we finish the remodel.

    joang*
    • CommentAuthorlisawill52
    • CommentTimeApr 16th 2019
     
    Hello, my husband of 38 years was diagnosed with whatever dementia/alzhiemers' : I can't really get a straight answer from anyone, but he has been on meds for over 8 years from one doctor to another. His memory is getting so much worse now that questions are repeated at least 5 times in 15 minutes. I am reasonably a patient person but I have no one for a team but myself. It is getting quite scary. He is not convinced he has memory issues and is very good at redirecting the conversations. Although he won't admit it, he is virtually totally dependant on me except for general activities of daily living which he is still able to manage well on his own. He does have to be reminded to eat and bathe though. I am really glad I found this site. I hope it will become part of my support as we continue this miserable journey.
    lisa
    • CommentAuthorWolf
    • CommentTimeApr 16th 2019
     
    Welcome Lisa. Unfortunately your post sounds like what a lot of us have gone through. My wife passed four years ago from early onset Alzheimer's. Welcome aboard.
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      CommentAuthorCharlotte
    • CommentTimeApr 16th 2019
     
    Welcome Lisa. I assume 52 is your year of birth. If so we were born the same year. What meds is he on?
    • CommentAuthorpaulc
    • CommentTimeApr 17th 2019
     
    Hi Lisa. Sorry that you need us but glad that you found us.

    Your husband probably has Anosognosia. He isn't in denial about his problems, he can't recognize that he has problems due to brain damage. It is very frustrating for caregivers, but also for our LOs. My wife doesn't admit that she has memory problems since she can't remember not remembering stuff. It is always "you didn't tell me."

    But knowing that someone can't do something or can't remember tests our patience even if it isn't their fault. You do need to find some respite, you will burn out if you are caregiving 24/7.
    • CommentAuthorpaulc
    • CommentTimeApr 17th 2019
     
    An example of anosognosia is a man with dementia who insisted that he was perfectly healthy. He couldn't get out of bed without falling, was incontinent, slept most of the day and had swallowing problems. But he saw himself as healthy.
    • CommentAuthoroakridge
    • CommentTimeApr 19th 2019
     
    And my husband who can't walk to the mailbox telling our neighbor he can clear all the downed trees in the creek by himself. If anyone offers help he refuses saying he can do it - and gets angry with me for wanting to hire someone because he can do it all. Or deciding now, at I am, to go through his wallet looking for things he can't find and expects me to get all the financial papers out because he doesn't understand something. He had the insurance card for the Ford 4x4 but not the truck. 15 minutes to convince him they are one and the same.

    Since I'm having trouble sleeping I said maybe I'd sleep upstairs where we have two big windows facing east and south and the morning sun would wake me up. Downstairs we have only one north facing window, very dreary. I don't get to sleep till the wee hours of the morning. He readily agreed, saying he and the dogs would sleep down here. He and one little dog might but the GS and our little rescue dog go where I go. Still I may try it tomorrow night,I'm having a hard time Losing sleep for so long, It's just a hard time all around right now. He is back in a sexual "mood" grabbing at me. I tell him my med blocks desire - -" then throw them out !! " It hurts my feelings even though I know it shouldn't, he can be so verbally abusive. We had a lot of good years but this change isn't my choice or my doing. I'd love a good roll in the hay------with my husband.
    • CommentAuthoroakridge
    • CommentTimeApr 20th 2019
     
    Sorry folks. A rough day yesterday that kept getting worse. Didn't mean to unload here.

    Welcome Lisa, although I still get upset with the same questions over and over it helped when the neuropsychologist told me it wasn't that he forgets, it's as if he never asked the question or heard the answer. He will admit to having a slight memory problem, but that's all. There is no answer, it's just getting up each day and taking joy wherever you can, even if it's just small things. Worry, anger, grief all work to undermine your own health, I'm in the same place. AZ runs in my family as does early 70s being their time to die, so thought it would be me. On the other hand, My husbands family all live to be in their 90s so at 82 he is still pretty healthy. I get really depressed if I let myself dwell on it.

    There is a little sparrow out front gathering pieces of fur from the dog I brushed yesterday. I always leave a bit loose for the birds to build their nests with. She is working away with her beak full, so life is still going on. The trees have leafed out and plants are coming up. I lost two roses to the cold weather but the others look good, the flowering quince I thought was dead has come back with a few blossoms so life continues its cycle. Maybe not as full and bright as before but spring has arrived again.
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      CommentAuthorCharlotte
    • CommentTimeApr 20th 2019
     
    Oakridge you say things we all have probably gone through.