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Thread: Dementia & Alzheimer's talk and support

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    FORT Fogey beerbelly's Avatar
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    Dementia & Alzheimer's talk and support

    Hi all,

    I think there might be some interest for those of us who have family and/or friends that are suffering from memory loss.

    This thread is for questions, support and airing out frustrations without judgement.

    Thanks!!!

    Beerbelly
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  2. #2
    Wait, what? ArchieComic Fan's Avatar
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    Re: Dementia & Alzheimer's talk and support

    Thank you beerbelly for starting this. I watched Still Alice yesterday and wow was that sad .

    My husband's mother has Mild Cognitive Impairment for at least five years now and we haven't seen it get any worse so we're thankful for that. From the reading I've done, some people with MCI never advance to Dementia or Alzheimer's and we're hoping she's one of those cases. She can still drive and we're keeping a close eye on that. My father in law is still alive and is her constant companion. He gets stressed sometimes but he won't take any of us up on an offer to take her shopping or whatever so that he can have a break. They've always done everything together and he is so resistant to allowing us to help. Yet when he gets frustrated, I can't feel too sorry for him for not allowing us to help. I don't get too involved with that kind of decision making because of family dynamics but they do entrust me to handle their bill paying and such, and most of those are automatic payments so it's really not too much to handle.

    It's very hard to get my father in law alone to ask him about her doctor visits and I can't ask on the phone because he's hard of hearing, she's always in the room, and they often switch the phone back and forth among them so you never know who you will be talking to next. My husband has five other brothers so like I said, I try to let them handle it among themselves, as I wouldn't want in-laws interfering with my parents, so I understand when to hang back.

    We don't know what the future will bring, it's really just a waiting game at this point to see if she progresses or not. That in itself is a blessing and a curse at the same time.
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    FORT Fogey
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    Re: Dementia & Alzheimer's talk and support

    These are diseases that impact so many people on so many levels. I have not walked in the heavy shoes that many of you have being a caregiver for a memory loss patient. Right now, on a smaller scale, I'm supporting my mom as she copes with her oldest and dearest friend suffering from dementia. When you consider that one of the greatest values of a lifelong friend is that you share so many memories, and have that person in your life who you don't have to explain your history to, I see how this is wearing on my mom. She's in a situation slightly similar to you ACF where not being the caregiver, she's reliant on family members to share what is going on. That can be touchy because they need so much support for the duties they are responsible for, and that balance has to be found between offering support to her husband and two children, but at the same time finding opportunities to ask questions and understand what is going on.

    It's a sad and cruel disease ...
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    FORT Fogey Debb70's Avatar
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    Re: Dementia & Alzheimer's talk and support

    It is difficult to help support when the person refuses it, but I would try to ensure they have signed their Durable Power of Attorney, Healthcare POA and Living Will. (Make sure you have a copy and can get the original when needed.) Those need to be signed while the person is competent. If not, you will have huge problems handling their affairs when they can't. In fact, you may have to go through a court process to obtain the ability. Even people with dementia can still sign these as long as they understand what the purpose is.

    With seniors who are resisting help, you have to pick your battles and I can understand allowing your husband to deal with issues, since they are your in-laws and not parents. If your husband suspects there is a problem with dad's care, I would confirm he really needs help and then insist.
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    FORT Fogey psucashcow's Avatar
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    Re: Dementia & Alzheimer's talk and support

    I am the Power of Attorney for my mother who suffers from diagnosed dementia. Her physical mobility is worsening and my brother and I attempted to sell her on moving to assisted living with the ability to transition to the memory care wing....did not go well. She has caregivers with her for 2 shifts during the day,but with winter coming, the house is too much a problem since I have to deal with all problems....for the house as well as for my mother. So much stress that I have started counseling.
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    FORT Fogey beerbelly's Avatar
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    Re: Dementia & Alzheimer's talk and support

    Quote Originally Posted by psucashcow View Post
    I am the Power of Attorney for my mother who suffers from diagnosed dementia. Her physical mobility is worsening and my brother and I attempted to sell her on moving to assisted living with the ability to transition to the memory care wing....did not go well. She has caregivers with her for 2 shifts during the day,but with winter coming, the house is too much a problem since I have to deal with all problems....for the house as well as for my mother. So much stress that I have started counseling.
    Funny you write this because I got a call from my mom at 6am this morning from my mom because she couldn't find a book and wanted 'to get the hell out of' the Assisted Living place. At first she loved it, and now she can't stand it and is blaming my Aunt.

    Also this weekend she was sick and wouldn't accept my help and then didn't answer the phone. Thank God she is in a place that I can call the front desk for them to check on her.

    Today I feel sad and tired and think I need help as well just to deal with all of this.
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    Red Sox Nation Brooks's Avatar
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    Re: Dementia & Alzheimer's talk and support

    When I was dealing with my Alzheimer's mom (who by then was living with me), my sister who lives on the opposite coast helped me immensely by joining a local support group. I learned a lot about the disease and how to cope from what she was then able to share with me.

    I never would have convinced my mother to go to a facility, but a medical emergency required we go to the hospital, and from there it was logistically and emotionally much simpler to transfer to a nursing home.

    (((Hugs))) to all who are dealing with this.
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    FORT Fogey Debb70's Avatar
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    Re: Dementia & Alzheimer's talk and support

    Quote Originally Posted by psucashcow View Post
    I am the Power of Attorney for my mother who suffers from diagnosed dementia. Her physical mobility is worsening and my brother and I attempted to sell her on moving to assisted living with the ability to transition to the memory care wing....did not go well. She has caregivers with her for 2 shifts during the day,but with winter coming, the house is too much a problem since I have to deal with all problems....for the house as well as for my mother. So much stress that I have started counseling.
    That can be difficult. I went through that with my cousin. Depending on how advanced her dementia is, it may be that she isn't in a position to make the decision. I had a hard time convincing my cousin, but she finally agreed. She went into a regular assisted living due to the doctor advising her that she needed it. I begged, pleaded, promised, etc. The plan was that she was going to assisted living to get her medication, physical therapy, good meals and to regain her strength and memory. Eventually, she forgot about those plans. She soon progressed to a Secure Memory Care facility, as she started to wander and needs substantial assistance in all areas of her daily life. The only daily activity that she needs limited assistance with is eating.

    After the early stages, it's pretty much a given that the person can't live alone. Falling is a huge issue, but even if they don't fall, they can do things suddenly that are not expected, such as eat nonfood items, wander from home, let strangers in the door, mistake medication, improperly toilet themselves, or have panic attacks.

    Maybe the doctor can help convince her. It's true that a medical emergency often happens that puts them in the hospital. It's often that their judgment is so poor, they can't see how much assistance they need. It's so frustrating.
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    FORT Fogey beerbelly's Avatar
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    Re: Dementia & Alzheimer's talk and support

    Such a stressful week.

    I changed my mom's urologist because she has a spot of cancer on her kidney and the other urologist was un-responsive. I have reminded her several times about this appointment.

    I have a care giver to meet her at the office. It seems my mom filled out some of the paperwork and then...left. Before the care giver got there.

    So, I have called several restaurants in the doctor's area to see if she was there (big thanks to Stella 34, Blue Smoke and Les Halles who were all so kind to look for her.)

    I was so worried that the cancer would have spread but didn't think she would leave before the appointment. I was on pins and needles today just to find out.

    I feel so out of control. I feel so lost. And stressed and now I'm a bucket full of tears. I do all this work for her to have an appointment only to find she gets there and leaves.

    I've also been trying to sell my parent's house, and then my own health concerns that I have been putting off because of my mom. Everything I do is one step forward and 5 steps back.

    Sometimes I feel like the woman who wants a pasta maker in a zombie land because I feel my problems are so small. And I shouldn't feel so overwhelmed.

    I just feel so lost.

    Thanks for letting me vent! (And cry while I do it!)
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    Re: Dementia & Alzheimer's talk and support

    Oh, beerbelly, I'm so sorry to hear about all your troubles. It sounds like your mother needs a full-time caretaker, someone always around her. I haven't had to go through that with my parents but I could just imagine how stressful it must be. The biggest problem we had with my mom is that she wasn't taking the medicine she was prescribed, only we didn't find that out until right before she died.

    I sometimes feel bad complaining about my problems when other people have problems, too, some worse than mine, but I still think it's healthy to get your feelings out. If you try to handle everything yourself and don't have an outlet, the stress can make you physically and mentally unwell. Even if other people can't fix what concerns you, just talking about it can give you some distance from your problems and give you a new perspective. Or if they can't help with your main problem, there might be other things they can assist you with to take some of the burden off your shoulders.

    All you can do is take things one step at a time, one decision at a time, and try to schedule some private time for yourself so that you're not always focused on the problems. You'll be better able to take care of your mom if you take care of yourself, too.
    beerbelly and Debb70 like this.
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