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    • CommentAuthorRodstar43
    • CommentTimeSep 12th 2017 edited
     
    If I even go out of the room for a minute I get a "are you ok?" If I Am out out of her suite at the hospital our son or daughter in law needs to be with her. She gets perinoid if I am on the computer too long. I can not do anything for or by myself. It is a 24/7-365 task. Her memory is in minutes.
    We live in an assisted living facility, but might as well be in the desert.
    •  
      CommentAuthormary75*
    • CommentTimeSep 12th 2017 edited
     
    I know from experience just how difficult and frustrating this stage is. Somehow, you will live through it. The disease will progress to its next stage, which can be easier on you. Do whatever you can to maintain your own health and sanity in the meantime. It sounds like you need a break. Can you get away for a few days? She can and should be taken care of by others. She won't like it, but you are important, too.
    • CommentAuthorbhv
    • CommentTimeSep 12th 2017
     
    My DH stalks me. Most of the time I ignore him. If I get him to leave the room it only lasts about 30 seconds. He jumps out of my way when he stands in the kitchen now because I just scowl at him. Fortunately he doesn't look over my shoulder when I am on the computer or tablet. My friend, Dave, had that problem with his wife. He made me swear not to mention Alzheimers in an email because, like my DH, she was unaware that she had a problem. Horrifically he died before she did! Must have been a heart attack cause we didn't know anything was wrong with his health. So find a way to take care of yourself. Even in assisted living you can hire someone to sit with her so you can go somewhere by yourself.

    Have you seen our thread about the cottage on the lake? It is an imaginary world that has been a life saver for many of us. I will post something there so it will come to the top for you. We have a Christmas Lodge too. We will all spend a lot of time there when the holidays come.
    • CommentAuthorRodstar43
    • CommentTimeSep 12th 2017 edited
     
    I have to watch it on the computer. My wife will purposely sneak up to look over my shoulder. I have to use desktop less. Even now, I am using my left pointer finger on a kindle. The "dumb" phone is slow. In October, one of my twin daughters is flying out to visit. Some reprivive. Even then I will have to text her when mom gets out of sorts. My tendency is to protect them. The other twin visits in December. For 50+ year olds they are quick but, they get surprised. I talked with my psychiatrist, yes, I'm not afraid to get my marbles counted and take meds. To deal with this AD problem with serious daily pain is a challenge.
    My thanks to. bhv and Mary75* for your interest in this area of dependence that I believe is different with with a spouse. Did not feel the Same as with my mother. I need time alone in my room by myself. I need to take care of some business. I like being alone. I don't get that at all, but going to work on getting some feel time.
    •  
      CommentAuthorCharlotte
    • CommentTimeSep 12th 2017
     
    My husband is not that bad - yet. But even though I am on the computer most of the day at night after he goes to bed is my time. I use to stay up until 1am but now that I have to get up for his day care 3 days a week, my internal clock is waking me up by 7:30 even days I don't have to. Now my new kitty wakes me up sometimes as early as 5:30 telling me time it is to play!!
    • CommentAuthorRodstar43
    • CommentTimeSep 14th 2017
     
    Being careful about what you write is. Just not fun. Especially with left fore finger. And I am right handed. Just keeping up regular communications is hard. It is bad enough with bad pain but, with depression too. Maintaining this pace would be hard at 30 much less 74. Oh well, one day at a time.
    • CommentAuthorRodstar43
    • CommentTimeJan 3rd 2018
     
    ttt
    • CommentAuthorRodstar43
    • CommentTimeJan 3rd 2018
     
    Does your spouse openly depend on you? From the moment we wake up til she falls asleep, what do we do next, where are we, when or did we eat. on and on. She can't follow a tv story now so I can't. Right in the middle of serious plot lines, she will ask for the fourth time when do we go to lunch. And we just went an hour ago. Try to watch a program that way.
    • CommentAuthormyrtle*
    • CommentTimeJan 4th 2018
     
    Rodstar, What you are describing is not the inevitable result of living with a spouse who has Alzheimer's. When my husband was living at home, he went to a day care center where he participated in activities. When he went into a LTC facility, he was in the dementia unit and an activities director offered different exercises and games from 9 a.m. to 3 p.m. ever week day.

    I don't understand what benefit your wife is getting out of this ALF. People at her stage of dementia usually need activities they can participate in. Doesn't this place offer any programs for dementia patients? Her hanging around and doing nothing is not only frustrating and stressful for you; it is bad for her.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 4th 2018
     
    Hugs Rodstar. Yes, many of us have 'velcro' spouses that wear us down and stress us out. More than ever we never have privacy or 'our time' anymore unless we stay up late which is what I do a lot.
  1.  
    Yes, I have the same question as Myrtle. This is the dickens of a problem at home, but Rodstar, you and your wife are in some kind of senior facility, correct? Why are you providing all the care? Where is the staff?
    • CommentAuthorNicky
    • CommentTimeJan 4th 2018
     
    Rodstar - does your ALF not have a memory care floor? My husband was in ALF for a few months but was on the 3rd floor - a locked memory care floor. The people on the 1st & 2nd floors had apartments & were autonomous or semi-autonomous. And when those people could no longer live in their apartments, they moved to the 3rd floor.

    The staff on a memory care floor would be more capable of dealing with AD. That's too much for you to handle.
    • CommentAuthorNicky
    • CommentTimeJan 4th 2018
     
    Rodstar - what I mean is that only she would go to the memory floor & you would stay in your apartment & could visit her anytime without the burden of caregiver.
    • CommentAuthorRodstar43
    • CommentTimeJan 9th 2018
     
    we are together in ALF. She stick to me like glu. 24/7-365
    memory shot, foget s in seconds,. noincontinit, no poop proplem, feed self, bath self ect
    has AD B Angiosarcoma- agressive cancer. not easy to get away.
    • CommentAuthoroakridge
    • CommentTimeJan 11th 2018
     
    Hello, I am new here, just found this site. My husband has mild/moderate alzheimers. Still a lot of things he can do - but memory is almost completely gone. Can't remember any of the good times in our past, memories that he and I shared over the years that have always been special to us, are gone now. I understand it, but hard to accept the person who was my husband has been replaced by a man who is solely dependent on me. I love the term "velcro spouse" as it is exactly where we are now. He won't go anyplace without me and won't let me go anyplace without him. He would watch tv 24/7 but wants me right beside him. I've read many comments here and see ourselves in many - we are doing OK at home, no family close by, have very little communication with friends because he won't go anyplace - and while I do understand his problems - it doesn't help me. I could go on for pages but I'm sure you've all been there. Right now my own problem is how to figure out how to do all the things that have to be done - plus things he used to do - while keeping myself same. All the support groups I've found are mainly individuals dealing with parents - which is very different than caring for a spouse. He is 80, I'm 75. He knows he has problems but doesn't want to admit it. Left the doctors office the minute he heard the word alzheimers and refused to go back. So we just get through the days, trying to find new ways to handle new problems. I did learn that a UTI can have a huge effect on their behavior so am watchful of that when he seems to be getting worse very fast. My biggest problem right now is personal hygiene, he refuses to shave, shower, change clothes etc. and he is bigger and stronger than me so can't just order him to take a shower. Thanks for listening :)
    • CommentAuthorRodstar43
    • CommentTimeJan 11th 2018
     
    Velcro strangers that we live with and it feels like no end in sight, only more darkness.
    • CommentAuthormyrtle*
    • CommentTimeJan 11th 2018
     
    Hi oakridge, Welcome to the site. I'm sorry you have to be here. My husband had Alzheimer's for 10 years. He was at home until the last 3 years and he died last March. After all these years, I still believe the best advice I ever got was in the beginning when a social worker told me, "If you don't take control of the situation, it will take control of you."

    It sounds like you have not gotten much help with his care yet. Many of us are familiar with that Velcro behavior. It's a very difficult stage. In the years my husband was at home, what I needed most was breathing room. I was able to arrange for that, but it got complicated sometimes. It sounds like you have not gotten much help with his care yet. I suggest you start thinking of about this issue in general terms. There are many options - a care manager, day care, companions, home health aides, etc. None of them is perfect and some are too expensive for many. The U.S. and Canada have different levels of financial assistance, with the U.S. (where I live) being the worst, unless your husband is a U.S. military veteran. We have members from many places, so there is a lot of knowledge on this site.

    As for hygiene, it is so hard because Alzheimer's patents have an aversion to water and bathing. I used to be able to coax my husband into the shower every few days. I also stayed up after he went to sleep so I could confiscate his dirty clothes lay out clean clothes for him to wear the next day. He never noticed and after a while he got used to looking for them on the chair where I had put them. Of course, getting the underwear changed was a little more difficult!

    I did not find this site until 2014 and I don't know how I survived without it. I hope you find it helpful, too.
  2.  
    Oakridge, I seem to recall from back around 2009 that divvi used to get her husband into the shower by bribing him with chocolates.
    •  
      CommentAuthormary75*
    • CommentTimeJan 11th 2018 edited
     
    Divvi's posts are also a good resource for handling incontinence. Go to search, type in Divvi*: and then click on "comments".
    • CommentAuthorRodstar43
    • CommentTimeJan 13th 2018
     
    Monday, I am planning on asking our primar doctor for a referral to Hospices which here also provides pallitave care. I have met with the director of this Kindred Hospice and have had good local references.
    This is a big step for me. Not sure how DW will react to it.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 14th 2018
     
    Good to hear you are taking the next step. If the person(s) you get to come help with her is experienced, they will know how to approach her. Praying that it will go smoothly and God's peace for you.
    • CommentAuthorNicky
    • CommentTimeJan 14th 2018
     
    ttt
    • CommentAuthorRodstar43
    • CommentTimeJan 15th 2018
     
    ttt
    • CommentAuthorRodstar43
    • CommentTimeJan 15th 2018
     
    Referral made. Nurse coming tomorrow. Another hurdle. I also asked for a phy eval for DW.
    • CommentAuthorRodstar43
    • CommentTimeJan 15th 2018
     
    ttt
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 15th 2018
     
    Good to hear Rodstar. Let us know how it comes out.
    • CommentAuthorRodstar43
    • CommentTimeJan 17th 2018
     
    well, Hospice nurses came and went. DW is on the fense. cancer not bad enough and Alz is not either. she is to functional. The will let. me me know. So the 24/7 keepps going.
  3.  
    Try another Hospice--their criteria for admission can differ. The first one I called refused to accept him because he answered one out of three questions correctly (remembered that he had been a policeman), and because he could still eat his food without choking on it. Needless to say, he was total, 24/7 care and I was ready to collapse and die, but that wasn't good enough for them. Sometimes a Hospice will not insist on that 6-month prognosis.
    • CommentAuthorRodstar43
    • CommentTimeJan 17th 2018
     
    Thinking about different hospice. They prefered the cancer route anyway. I will see that doctor Friday. I guess DW is to functional. Guess my level of depression or physical ability doesn't count. They say we are on the fence. I met director of a hospital group thearpy division of mental health. I don't have 3 hours to give them in a week. My wife was with me in that meeting. No worry. She fogot before leaving parking lot. Being full time caretaker is tough duty. You Ladies still have it tougher.
    • CommentAuthorRodstar43
    • CommentTimeJan 17th 2018
     
    ttt
    • CommentAuthorRodstar43
    • CommentTimeJan 17th 2018
     
    ttt
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 18th 2018
     
    ttt
    • CommentAuthorRodstar43
    • CommentTimeJan 20th 2018
     
    Saw Cancer doctor in Lubbock yesterday. What a tirinf trip for me physically.
    Anyway, told them we were not going the surgery route in houston. He did not look surprised as to the reason being AD. He had one other patient like my wife but the angiosarcoma was on scalp. he suggested a a chemo treatment to slow the uglyness down. It has spread to above eye.
    This once a week trip is going to be a 130 mile each way pain.
    trapped. would I do this if she was normal- yes
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 20th 2018
     
    (((hugs))) such tough and emotionally painful decisions we often have to make. Your doing a great job caring for her.
    • CommentAuthoroakridge
    • CommentTimeJan 20th 2018
     
    Rodstar43, it sounds like you are dealing with several different, but related, problems at the same time. I have mixed feelings about chemo, having dealt with it in my family. Last April my oldest grandson was diagnosed with stage 4 Pancreatic Cancer. The oncologist told his parents he had about 6 months but with chemo he would have at least a year. I begged them not to do the chemo. My experience said he had nowhere near that long, why make him miserable for the time he had left. They went ahead with it based on what the doctor said. We immediately flew out, arrived a couple days after his first chemo treatment. He was sick, couldn't be outside, he lives in SanDiego and we rented a condo on the beach so he could come spend time with us. That was Monday, Tuesday am I had to call the ambulance to take him to hospital and he died Wednesday morning. He Dad and Stepmother got there late Tuesday night and his Mother and Brother didn't make it till Wednesday morning, just minutes before he died. A 36yr old young man with his life ahead of him. I was on the phone with his parents as soon as he was removed from the ambulance and could hear what they were saying. They allowed me to stay with him, and although I didn't understand all the tests, from their looks and the number of doctors, knew it was bad. His parents were hesitant to book a flight because --- the doctor said.... I had to be very blunt before they took me seriously, they still thought I was over reacting till the head surgeon came out and told me it he had only 24-48 hours. My sons wife was furious with me - as if I was the one who caused it. Over and over she kept saying.....but I specifically asked the doctor how long if we did the chemo.........

    My oldest son had chemo, and died. My husband had chemo and it did more harm than good. My sister had chemo and it destroyed other organs that made her miserable - she already had mild AD. When my Mother, AD, was diagnosed with colon cancer I chose not to have chemo, she had been sick for so long and as long as their was no pain, there was no reason to do chemo. She lived maybe two years after, in the nursing home but was generally happy right to the end.

    It's so hard when it is your wife, you want to do the right thing, but what is the right thing? How many chemo treatments are they planning? I assume they will make a "mask" for her face - but with DH & DS, it couldn't contain the radiation so damaged other organs - was it worth it? Will it be radiation or infusion? I always hated to agree to a treatment, that I knew would be painful, for someone I loved. When the patient isn't coherent enough to make the decision, I'd vote for what would make her the most comfortable for the time she has left. None of us know how long that will be. So hard for you I know, make the decision and then accept you did what you thought was best for her, when she couldn't do it herself. That's love.
    • CommentAuthorRodstar43
    • CommentTimeJan 20th 2018
     
    The chemo mentioned was Paclitaxol, nurse called it Taxol
    no me tion o number of treatments.
    I was not expecting it based on previous discusions so I was. aught flat footed..

    I think the angiosarcoma is spreadig above corner of eye. Do tor made it sound lime more of
    palliative treatment. no mention of cure or extension of life.
    This is a rare cancer so any info is appreciated.
    • CommentAuthoroakridge
    • CommentTimeJan 20th 2018
     
    Rodstar, I googled Angiosarcoma and there are a number of pages of information that describe it, treatment - including chemo and prognosis based on location and stage. I'm sure you've seen a lot of this, probably have an overload of information but it might help you now in making your decision. I thought this site gave a good evaluation, easy to understand -https://cancerwall.com/angiosarcoma-prognosis-symptoms-treatment-pictures-causes. If you can't get it up I can cut and paste parts of it here.

    I wish I could sit with you and hold your hand, be someone you could bounce the "what if" questions off of. This is a heavy burden to make the decision alone. I know how you feel about burdening your girls, plus, not being there they really do not know the full story. I don't know your religion, but I will pray tonight for both you and your wife as you go through this time. I don't know if there is a right or wrong decision but will pray for peace for you once the decision is made.
    • CommentAuthorRodstar43
    • CommentTimeJan 21st 2018
     
    Thanks Oakridge for your concern and info. This cancer thing started in October with the results of two biosps. Then visit with a cancer specialist in Lubbock , then tests. PET, CAT scans, ultasound,xrays ect. Biosps sent to MD Anderson cancer cennter in Houston. Turned down surgery there. Cancer large area on left cheek of face. Itis getting larger. Also had an Parkenson event.
    Stage 5,almost 6 alz. we are living together in an ALF. I have had long term chronic pain and depresion. So as caretaker I M doing best as I can. We have been married 55 years.
    And the saga goes on
    • CommentAuthorRodstar43
    • CommentTimeJan 21st 2018
     
    I am too healthy and she is to functional and we have no end date so Hospice is on fence. So I repeat answers and here questions over and over and over.........
    • CommentAuthorRodstar43
    • CommentTimeJan 21st 2018
     
    Both of us are secure with our eternal plans that were purchased for us by tbe Lord Jesus Hiself. His word and promise for life that is eternal is what we believe in and have fath in. Funny, even with DW super short memory problems she knows her future with Jesus.
    • CommentAuthorRodstar43
    • CommentTimeJan 23rd 2018
     
    Anyone heard of any effect that cancer chemo treatments has on Alzheimers? In our case Paclitaxol?
    The side efects are bad as you hear, but what does it speccifically do to AD?
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 23rd 2018
     
    I have no idea but I remember the effects chemo had on Mim. Brain fog was a complete.

    As for the specific drug Paclitaxol - taxol drugs were seen as a possible aid to treat alzheimer's. I remember when the study first came out with good results in mice, people were volunteering like crazy to be guinea pigs. Unfortunately, I don't think it ever took off, at least I can't find recent research. If you follow the google page below, it will have many articles on the possibility of this drug to treat AD. If they are true, aside from the side effects one can get with chemo, who knows -it may help her AD.

    https://www.google.com/search?ei=Iq9nWuGfOdSwjwPmzZ_gDA&q=Paclitaxol+and+alzheimer%27s+disease&oq=Paclitaxol+and+alzheimer%27s+disease&gs_l=psy-ab.3..0i22i30k1.733.5287.0.5394.24.22.0.2.2.0.302.2122.15j3j1j1.20.0....0...1c.1.64.psy-ab..2.21.2080...33i160k1.0.Zq43xrB05WA

    but can't forget the side effects chemo can produce - joint pain, diarrhea, brain fog, etc.

    With the study it is tempting to try it where there is a chance her AD could benefit. Asking about the drug I think has just added more confusion in making the decision.
    • CommentAuthorRodstar43
    • CommentTimeJan 25th 2018
     
    Thanks Charlotte, I checked out the web page you sited and others. Best I can recall is that they thougt that Paxtol might be helpful for the early stages of AD. That would exclude DW. But, like you I found no info in the lasr 5 years. My DW gets anxious over A tummy ache now, what would happen with the all the side effects of chemo. I cannot see how that would improve her quality of life.
    • CommentAuthorRodstar43
    • CommentTimeJan 25th 2018
     
    I have not received doctor's letter yet about starting chemo so, only decision for sure that I made is that I am not driving 125 miles to Lubbock every week. Plus, I found out yesterday thar I need cataract surgury in my best eye. I also have to see a neurosurgeon next month. Also, another daughter flies in for a week's visit first of month. I also am getting a psychiatre exam for DW on Feb first. She has not had one in 5 years. Busy month. Hope to handle it all. Maybe another trip to the lodge.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 25th 2018
     
    curious why doing a psych exam? What purpose is it for? Sounds like you have a very busy few weeks coming up.

    After the second one during year two that got my husband so upset, I refuse to put him through it anymore cause it won't tell us anything we don't already know.
    • CommentAuthorRodstar43
    • CommentTimeJan 25th 2018
     
    Maybe some drugs to mellow her out.. Also, thinking about some things hospice said. And, I Want someone here to make more than a 4 question exam. From what I heard from the doctor's PA this will not be the 5 hour test and interview she had in 2010.
    • CommentAuthorRodstar43
    • CommentTimeJan 25th 2018
     
    I also Want doctors opinion about chemo.