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So my mom took a big step down the dementia road last Friday night. By morning I, her daughter, was now her good friend. After a walk she wanted to take a bus and the streetcar to go home...you get the picture. When I visited on Sunday it seemed like my presence there created more confusion for her. The CNA said she had a great morning. I visited a bit but she seemed depressed and when I went to go home she assumed she would be going with me since she was not in her home and I think I was familiar. We had a big problem with transitioning for me to go home and her to stay. I said goodbye and it seemed like she went back in with the CNA but then they came through the door again...my mom in the wheel chair saying she was going home with me. The CNA said she suddenly stood and nearly fell trying to get back to the door to go with me. She has the strength to do this new behavior of suddenly standing but can't maintain standing and will fall if someone isn't right there to hold her up.

I don't know what to do to make this easier for my mom. I would like to visit her but in a way that doesn't create more confusion for her. I usually just go along with where she is at...I'm fine with being her good friend and sometimes her daughter in her mind. She just started all these new behaviors of jumping up to go to an imaginary doctor's appointment or imaginary church (not on Sunday) or imaginary shopping trip appointment. All this jumping up is now making her back hurt worse, and I'm afraid we might have to add more pain med.

I don't know what to do.

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visited 88 year old mom in an assisted living facility with dementia care. went to visit her and she wants to come home. it is heart breaking and I wish she would pass quietly in her sleep for her and for me
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My heart goes out to you, tltimme. I'm sorry for all your sadness the last year. It seems like there are no really good answers in this situation. You just do the best you can and try to focus on what you are able to do rather than how inadequate we all feel at times in this situation.

I know that if my mom was rational and able to control all of this, it would not be her desire to consume my life with her problems. All of us want to feel significant and loved. My mother no longer knows how to go about getting that need met in a healthy way.
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elizabethgrace, letting go is hard for me as I freely admit that I am a control freak. Even though I am the youngest and only girl of three, mom has always referred to me as the fixer. I am logical, analyze things throughly and get things done in a organized manner.......except this past year when mom got so bad so quickly. I think I have cried more tears in the last year than I have my entire 50 years on earth. I wanted to care for her here at home, but realized several months ago that I was short changing her as she deserves the best care possible. Plus I could start to feel the beginings of resentment. I don't want to waste whatever time I have left with her feeling resentful or guilty.
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tltimme, again there is a parallel to our lives. I've become much closer to my brother, as well. Because we live 7 hours apart, one of us has to do this caregiving thing by ourselves...and now it is my turn. When my brother had responsibility for Mom, I tried never to criticize. He's returning the favor. He calls and encourages me.

Let me know how that "letting go" thing goes for you. :) Even this afternoon I was telling my husband the same old stuff trying to talk through the guilty feelings. Rationally I know that I can't fix anything and that at times my presence just causes her anxiety, but it's hard to let go.

My situation is compounded by the fact that Mom has been mentally ill (but high functioning most of the time) for 30 years - since I was a young adult. Honestly, she's just worn me out after all this time.
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Part of me feels guilty for not being there every day or so, but as my brother reminded me, mom really has no concept of time anymore so she isn't upset when I don't show up every Tuesday. As I mentioned the one good thing that has come out of all of this is a much closer relationship with my oldest brother. We were not close as kids as there was 7 years between us, however, as we age that is less of a gap. I know that mom is safe and well taken care of so it's up to me to learn to "let go" .
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I also witnessed the "angry" moments to me from my Grandmother and backed off on visits. She also did the same to my mom who would come home crying. I encouraged her to stay away also. Grandma was always so sweet to the staff. Looking back, I guess it was OK since they were present 24/7. My prayers each night are for all the dedicated caregivers.
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tltimme, it is validating to hear that you go through the same with your mother, although I am sorry that anyone has to live through this.

Last week one of the staff asked Mom if she'd like for them to call me to pick up something for her at the grocery store. Her response was, "NO! Don't call her! She always gets mad at me!" Thankfully they know who is always mad.

As my visits decreased, so did her absolute dependence on me. Her physical therapist reminds me that the more I do for her, the more she declines and becomes unable to do for herself. I was in the role of anticipating her needs and wants, so she didn't even have to verbalize them. It's hard to watch her do something that I could take away from her and do in a nanosecond, but that really isn't helpful to her. I was a big part of the problem. And I made myself an easy target for her frustrations.

I'm sure this phase will end. Things are getting worse. Sometimes she doesn't know me or my brother. But instead of being heartbroken over this, which is what I expected, I am comforted by the fact that she's not grieving about missing anyone. She's living in the moment.

I agree that we need to keep an eye on what is going on at AL's and NH's, but just seeing my mother's smile when one of the staff shows up lets me know that she feels safe and at home there.
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elizabethgrace, goodness your response could have been written about my mom by mom. Mom recently moved to assisted living Alzheimers facility and as you said when I visit she is miserable, unhappy and always complaining to and about me. But let a member of the staff come around and it's hugs and kisses. I've realized that I need to step away and not visit every other day. It's better for me and for her. The staff keeps me up to date on her doings and moods, plus I find that visits are actually a little easier when I only go once or twice a week.
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I loved SafetyBunns response - keep visits short and "DO" things instead of attempting involved conversations. Trying to make conversation with my mother makes her anxious, because that is when she realizes that she has no memories - not even from an hour ago.

When my mother first moved to the AL close to me, I took care of everything for her. She called me day and night. She vented all of her frustrations to me. Every call felt like she was accusing me because she was unhappy. I jumped at every demand and lost sleep for the things that I could not fix. Finally her therapist suggested that I cut back on the visits and ignore the calls at times. Gradually she started adjusting.

It's sad that when I'm with her, she's miserable, but when the activities director at the AL walks up to her, she lights up. That happened last week when I was visiting. But I'm thankful that she does love the staff, even if she's always aggravated with me.
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You have to keep up the visiting. The more you visit the better. Even the best nursing homes have to be kept under your watchful eye. My dad spent six weeks in one and had dementia, but still had moments of clarity. He cried the first time he realized that he wasn't going home. I ended up convincing my mother to get him out and bring him to my house where we cared for him until he died. My siblings were angry that we took him out. I know that nursing homes are a necessity sometimes, so impromptu visiting is a must. Watch the meds they are giving her too and don't worry about it when she says she wants to go home. She needs you to be her advocate so you have to put your feelings aside. I feel for you and I know it's a tough road to hoe. Find time to take care of yourself too. That is also a must!
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Sudden downgrades are sometimes triggered by small strokes (TIA).You may to have her checked out though there is little they can do for her now other than therapy.They usually do a CT of the brain and if she had one they may want to start her on some meds to try and prevent another one.Many elderly have clots in their vascular system or heart problems that lead to strokes.
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I am a registered nurse and worked for many years on an alzheimer unit. It is so much harder on the family than the loved one. I cannot tell you how many heartbreaking crying jags I would watch when a loved one was leaving and the family member wanted to go "home," Guess what would happen about 5 minutes after the family member was finally able to disengage? The patient would be just fine and on to other things to obsess about. Not to say our parents do not love us. They just do not remember!! There were many times that I would take a family member into the nursing station to give them a heart to heart. It would break my heart to know that they would be going home thinking that their parent was in the same state as when they left. That was just not the case. The patients were fine, they just had dementia or alzheimers and were not the same people that they used to be. I love the comment about making visits short and please do something!! If you try and have a rational conversation it is not going to happen. What my patients really enjoyed was being able to sit in the sun for a while, looking at magazines of baby animals, getting a manicure or hand massage, looking at old family photos, coloring a picture. When you visit your family member do what occupational therapy does. Little easy art projects that you can do together - better even if you can do it outdoors. I also think it is a good idea to drop in at times that the staff does not expect you to. It is important that the care is consistent and loving. My heart and prayers go out to you.
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You are where no son or daughter wants to find themselves...You are right to not want to confuse. In my humble opinion and from experience, (my mom's AD is now in the severe stage and she lives with me) a caring visit is always helpful. That being said I am looking at care facilities for her now and my own experience of what you are living through now may change my view...I don't have any advice to offer but I do wish you and your mom the best...
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Sweetie, I know how hard this is. I went through so much with my grandmother for years as I cared for her during the years she had Alzheimer's and Parkinsons. I had her live with me and used some help from nursing assistants but it was heartbreaking none the less. Yes, of course, continue to visit your mother. Even if she does not know who you are. Even though it hurts. Even if she cries when you leave. You are her child and always will be. She brought you into the world and cared for you when you needed her and it is your turn now. I bet you did the same when she left you with someone or at school the first time! It is not your fault if she has bad spells (they ALL do) nor if she accidentally falls. Your heart is in the right place and the right place for your body is visiting your mom. Somewhere inside, she loves you so much. No one can take that from her. She might not even remember but as I always told people when my grandmother was at her worst , I remembered her! I wish you the best and send hugs of comfort across the miles.
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I am a nurse and attended Alzheimer's workshops. Please contact your local group and they will assist you with all your concerns. I referred families of dementia patients and they were all very pleased. One detail they suggest is to keep your visits short and "DO" things instead of attempting to carry on a conversation, such as a manicure, reading, puzzles ect. As Darcy mentioned--- visit and keep your eyes and ears open to the facility and staff. Morning is best, but don't be routine as the facility will know your schedule.
Best of luck. All family caregivers are in my prayers nightly!!
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Just some input...my 88 year old Aunt fell and broke her hip, after therapy for 6 weeks, they started medication and she began to see bears in her trees outside her home in Alabama...she was also talking out of her head...being that this was sudden I asked that her medication be adjusted, they did that and after a few days she was talking normally again...Just because a doctor says they need certain medications doesn't make it the gospel truth...my Dad was also prescribed alzhiemers medication because he started with short term memory loss...he was like a zombie until I told them to stop that medication completely...
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My mom inlaw has dementia and when she fell and broke her hip last year, it got worse. She was living on an independant side of a snior center and we had to have her moved to the assisted side. She hated it, telling me the food was bad, she was treated badly etc. My husband and I made a point to go every chance we got during the week to see what was going on...and everything was always fine. She had to sdjust to them checking on her day and night, assisting her in her needs (she has parkinson and diabetes also). She has adjusted ok finally and still demanded we come all the time. We take her to all her dr and dental appts, out to eat, shopp, etc (No family members want to deal with her since she is so demanding)..but we have now worked it down to seeing her once a week...but we make a whole day of it, shopping, out to eat....whatever she wants to do (upon reason that is). Sometimes she knws us, sometimes she doesn't...but she looks forward to us coming for she knows she is out for the whole day having fun......you have to remember you have a life also....so make sure you find some time for you.
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I worked for years as a nurse in a nursing home for the elderly. Visit. Someone needs to be keeping track of what they are doing for one. I have worked in several nursing homes... not one of them where I would trust to leave a loved one without FREQUENTLY checking in.

Another thing: The next time you go it might be perfectly fine. Mornings generally are better for visits. Dementia seems to get worse as the day goes on, with behaviors and such. Very likely she will be doing these things in the evenings/late afternoons if you are there or not.

It is VERY common to "step back in time" for dementia patients. My mom was 3 years old the other day! :) lol, same age as her great grandson. Most days he is the mature one of the 2 though! Most days my mom has no clue who I am and laughs like it is ridiculous if I say I am her daughter. She doesn't HAVE kids. (news to me!) I am her best friend, sister (she never even had a sister... always said that was her biggest wish in life though...) sister in law, names I have never heard before... But almost never me. The most common one: Mother. "Mother" "Mother!" I smile my tight smile and remind her that "Mother" is in heaven. That she also doesn't believe, so we re-direct the conversation else where.

Yes it is trying and hard. Worse for us than her.

Keep visiting her.
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I am facing this also. We moved mom into an assisted living/memory care home this past week. When I go see her, she tells me that things are terrible, that she is not sleeping, etc. When my brother sees her, she is in a good mood, wanting to walk around and can't wait for the next meal. The staff says that she is adjusting fine. My thoughts are that perhaps since I was her major caretaker that I need to step back and limit my visits to a couple a week until it seems that she is totally settled.
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Mewlan, if your mom suddenly took a nose dive in the dementia department, could it be a UTI? Maybe she should be seen by a doctor to see if there's something else going on. You didn't say, but has your mom been moved recently somewhere else? Is she living assisted or in a nursing home now?
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I understand - My Mother fell and broke her hip and has been in the hospital for 2 weeks. This incident has taken a severe toll on her mental state. She will not be able to be discharged home unless we have 24 hour nursing care. So this means a personal care home - my Mother will be devastated as she is so sure she is coming home to her apartment that is attached to my home. I can see that visiting her in a personal care home will be difficult as she will want to come home with me each time I visit. I am going to try to strategy that was suggested by shorty4631.
God Bless you - we are doing the best we can.
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This is how I handled my husband...I never used the word "home"...I would say I need to go buy groceries, put gas in the car, etc. and I will see you later. He would accept that story and so I could leave. You might try that and see if she accepts it. I felt it was important for me to visit him 5 days out of 7 to make sure he was getting everything he needed. Good luck.
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