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Many days she is "pleasantly confused" and tells some of the most amazing stories of her day. Other times she can be very anxious, shaking, and calling out for help in her room at the nursing home. She is on hospice care and they are doing all they can to keep her comfortable. However, two days ago there was no pleasant confusion, instead she became very emotional and dark. When I asked her why she said "I lost the baby." It is very hard to see my 87-year-old mother in this stage and, emotionally, it through me into a tailspin. After a visit to the doctor yesterday I'm hoping to be able to handle things a little better. This is such a hard thing for a daughter and caregiver. Have others experienced such emotional issues with parents and dementia? How did you handle it?

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I went through a lot personally as my dad's caregiver. He lived with us until the time came when I couldn't care for him anymore and he went to live in a nursing home. He had dementia related to liver failure.

I handled everything well until he went into skilled care. Having him there was like a full-time job between the visits, the meetings with the social workers, care plan meetings, chasing down his missing laundry, searching for his lost hearing aids, phone calls at 11pm from him asking me where his socks were and having to take him to the hospital twice a week to have fluid drained out of his peritoneal cavity. For months I wandered around in a fog and would burst into tears at the slightest provocation. One particular stressful day at the hospital I was near hysteria and as soon as I got my dad situated I went in search of a priest or a nun (it was a Catholic hospital). No one was able to find anyone for me but the hospital volunteers sat me down, gave me refreshments, and let me cry it out.

I've never known such stress in my life and haven't experienced it like that since. It was all so overwhelming and it was constant, all day everyday. I lost a lot of weight and wasn't sleeping well.

A few days before my dad died I got to his room and he was just sitting there, bewildered and confused and tearful. I sat next time him and asked him what was wrong and he couldn't give me an answer. He was so upset. Not agitated really, just upset and crying. My mothering instinct took over and I stood up and placed my hand on his head and brought his head to my chest to comfort him. I stroked his hair and told him that everything was fine, that I was there and everything was going to be fine. It was the last time I ever saw him.

He died 4 years ago today.

I would imagine that there are people out there who would handle it much better than I did but you used the word "tailspin" and that's an appropriate word. An emotional tailspin. I was such a basket case so I don't have much to offer you when it comes to handling all of this but I can certainly relate.
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Well I agree with Eyerishlass and can only tell you that I most certainly relate to what you are going through. It's an emotional tailspin. It never leaves your thoughts and the tears just flow some days. My mother just passed 3 months ago after a long journey with early onset Alzheimer's. She was just 69 when she died. Many days she cried almost non-stop. There was no consoling her. It was miserable to watch. This disease is just so cruel. It affects the whole family. I have no magic words of wisdom for you, but know that many of us know how you feel. It is simply a sign of our humanity and we pass through it. . .one tear after another. . .but eventually we come through and realize we are are capable of amazing things.
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Sometimes I feel that underneath all our questions is "how do we keep this from happening to me and my future caregivers!" At least I think that, as I carry one gene for late onset Alzheimer's and witnessed it in my great-grandmother when I was a child. My grandfather and mother both died before the dementia set in--78 and 79 respectively--and I will be 80 my next birthday. My very prim great-grandma was in her mid-80s when she starting taking off her clothes and walking down the street. My late husband had vascular dementia before dying of a stroke, but he was mostly reasonable to deal with. My first and ex husband is now in nursing home with dementia of some kind and my two children are fighting over what is best for him. Some days I just want to go jump off a bridge so that they won't have to deal with me in a few years.
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Goldie, I so feel for you! My mom has Vascular dementia, she goes through periods of agitation and Upset where she tells us either She's going to H*ll, she didn't pay her taxes in 1937 and is going to jail, has leprosy, or MRSA. Crying, wringing her hands. It's awful.

We call in the behavioral health team and they have so far been able to get her back to baseline with anti anxiety and antidepressants.
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My mom is 87 and going through this too. Your mom sounds just like my mom with the things she says and does. I have her at my home and I have the most wonderful neighbor who sits with her when I work part time. I find I am holding her hand and her more often then ever which is great for me and it calms her down. I also tell her to just relax you're OK. Her favorite place to go is church. When all the changes started, I prayed to God to please help me when things were getting rough. I didn't think He was listening until I realized I still have my sanity and I am happy and can accept her challenges. I tried to get her to do more but it doesn't usually work. We may start out then just turn around and go back home.
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Is it possible that your mom could have had an early miscarriage years ago, that nobody except her would have known about, and that the memory comes back to her? When my mom went to the hospital on her last stay, she pointed to her stomach and she told me that she thought that the doctors had made a mistake about her, because she did not think that she was going to have a baby. I told her that she was right and that she was not going to have a baby. This was the last time we had a real conversation. On the following days, she tried to speak but words would not come out of her mouth. She died about a week later. That was a little more than three months ago.
I think that you are doing the right thing by talking about what you and and your mom are going through. One of the hardest things for me was to deal with people who would not acknowledge the reality of my mother's dementia. I had to witness things like my sister-in-law's fiance making fun of my mother at my in-laws', because (best case scenario) he had no clue of what was going on.
It seems from what you say that you have made sure that everything was done to help your mother, and that is such a big deal. Please try to find comfort in what you try to do, not necessarily in the results you get. My heart goes out to you.
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There is a woman who teaches classes on how to relate and help someone with dementia/alzheimers. I have listened to her classes many times and she is amazing. It has helped me tremendously ...look her up...not sure of name. My heart goes out to you as I have experienced dementia with my mother before she died and currently my dear older (76) sister. Since I have watched the videos of this teacher I can relate many of her teachings to my relatives and it has helped a great deal.
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dearie123, Are you referring to Teepa Snow?
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Oh my - right now my heart is breaking on Mother's Day. My Mom is 93, lives with me & my husband & is physically good, mentally not so much. She started out good today & we went to Sunday School. Afterward she nose-dived for no apparent reason. Didn't want to go to lunch & just didn't feel good. I brought her home & she went straight to bed. I'm avoiding her & staying outside because I can't deal with her today. I love her so much but she is always upset or sad about something. Not the woman I knew. Most days I just want to cry but have to hold it together for the family. No one sees her sadness the way I do. She always seems to act fine with everyone else. Tough times. I am thinking of placing her in AL because it is soooo difficult.
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Thanks for the question - and the great answers. My mom is 90 and we are in the stretch where the moods switch on a dime. One minute wants to go out, then the next minute does not. One minute happy, seminormal. The next minute crying. Or angry. Or agitating about her money. You could just drive yourself crazy trying to keep up with the mood switches. As everyone has said, there are no easy answers or solutions. It's all about intention. Keep your heart open and just go with your instincts, and know they will be right. Happy Mother's Day to all of us!
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My Mom was diagnosed with Alzheimer's when she was 87. She lived alone and was doing okay. She decided, on her own, to move to assisted living. The move caused her mind to deteriorate a little more. Then, at 90, she fell and broke her hip. That was 8 months ago and between the trauma of the fall, surgery, rehab, Nursing Homes, etc, and then the actual moving of her from place to place, she went from about a 5 to a 10 on a scale of one to ten in just a matter of months. Now she mostly speaks gibberish, does not understand much, is unable to walk and is incontinent. Her health was good so I thought we would not be facing this for a long time to come, and was not prepared for it. I try to go see her at least every other day but it gets harder and harder since she no longer knows me. I am no longer doing this for her, I am doing it for me. I don't think I'll ever regret continuing to go see her, look after her interests, and call her Mama and give her a hug and kiss while I am there. It is hard but I'll be there until the end. Stay strong and focused.
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I took my Mom into my home in Nov 2014. I "never" adjusted to her being here the whole 20 months. I had a hard time even looking at her because she had gotten so frail. I also got blamed for things because I was the one who was there. I had no idea he to handle certain situations so got very impatient. I had gone from babysitting my Gson from birth to 20 months five days a week to Mom 24/7. I found I am not a caregiver and at 67 I won't do it again unless it's my husband. Mom is now in long-term and doing pretty well. I wash her clothes so I can keep track of them.
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My 17 yr old son and I spent some time with Mom today on Mothers' Day...it was very nice but bittersweet. We see the Alzheimers dementia progressing and I kept thinking 'will she be here next year ??? She talked randomly and almost nonstop but it was ok and we just kept up ; if we weren't sure what she was talking about, we just asked in a way that didn't upset her...Mom was so cute in her way but I couldn't shake that feeling if she would be here or not next year, and if she'd even know it was Mothers Day or not. Since I was driving I couldn't give deep thought to it so instead I just tried to maintain my emotions and enjoy the time with her and my son as much as I could. I love her so much...is so bittersweet....
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Yes, it's Teepa Snow!
She's awesome!!
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Your mom also sounds a lot like my mom. All I can say is there are good days and bad days with dementia. I had a very pleasant visit with my mom on mother's day. I gave her a gift and she said "oh, am I a mother"; then she told me about a witch who lives in the woods and how the woman sitting outside her room grants wishes. She was very pleasant and we had a great visit.

Other days she is angry and agitated. During these times: I think they know something is wrong, but they are not sure what it is. Or they may not feel well. I agree with bee 1988- maybe your mother had a memory of a miscarriage and she was mourning. The minds are fragmented now; it is hard to watch. They will remember something and then react. Unfortunately I have more pleasant visits with my mom when she is more delusional. I was always told to live in their reality, so we do. When she is more lucid, she tends to me more agitated and anxious.

Just go with the flow and know there will be good days and bad and try to enjoy the good for as long as you have them.
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Yes, Goldie...no one ever says that being a caregiver for a patient with dementia, especially a mother, is easy. But...others before you have done it and you can too. Glean what you can from the Hospice service that your Mom is getting. I'm sure they will be able to help you cope. This is a hard time and no amount of advice is going to help you deal with it. Just hand in there.
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Everyday is a whirlwind of emotions...
You have to deal with it one day at a time. I am not the primary caregiver but my mom is, so am going through the changes of my dad with her.

For the most part, I cry and feel helpless soo as i go through my bouts of crying, i force myself not to be sad and look at the big picture. I CAN NOT be weak for them, I need to advocate and help my mom as much as I could...we have to deal.
Always try to look at the positive sides of things...and still let yourself have days or moments of saddness---it is definitely an achy LONG goodbye.
REMEMBER, once you overcome this nothing else is impossible. Hang in there =(
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Have you had your mom tested for a UTI...? In the elderly, a UTI can and often does cause "delusions" that are like sudden worsening of dementia, but when the UTI is treated, the aggravated episode of delusional thinking goes away, (UTI "delusions" can include agitation, paranoia, anxiety and even hallucinations). If the patient had relatively mild dementia or old-age memory issues, resolving the UTI is amazing in how quickly they return to their pre-UTI status. However, like in my mother's case, she has had NUMEROUS and serious UTIs that escalated to systemic infections and I believe those repeated infections took their toll over time and although she was mentally (and personally) very strong and recovered many,
many times, she's finally now showing rapid mental decline in a short period of time. She IS nearly 97, still lives in her home (!) and her willfulness is sill intact and will NOT accept outside help, although I've tried every year for over 7 years to hire help - she needs it and I DO TOO.. but that's another story...! Let us know if your mom gets regular urinalysis for UTIs... the elderly do not have the same "symptoms" as younger people, and a sudden escalation of what appears to be "dementia' may actually be the only symptom that your old parent has a UTI. FYI. Bless you as you navigate these difficult days... and nights...
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Thank you all for your wonderful answers. I take comfort in knowing that I am not alone and that I WILL get through this. I sat with mom for an hour outside on the porch today - she asked me how my first day of school was; how my sister did jumping off the dock in the water..and was my brother's swimming improving - I couldn't help but respond he was a horrible swimmer lol..yes..family dynamics.

Mom has frequent UTI and has been under massive doses of antibiotics - her body just doesnt react to them anymore. This now though is so much different than the hallucinations she had with a UTI. These stories are real - she has bottled beer (never worked in a brewery), lost a baby (never had a miscarriage), has been to jail and broke out riding the bus home (never been in jail), etc. As my doctor told me, find the humor where you can and just go along with her. I hope my friends and family will do the same with me as I tell them of my visits :)

Thank you all, again, very much for your responses. They do indeed help!
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My mom had vascular dementia due to heart failure and she was very emotional as we lost my father 5 1/2 years ago and I looked after them both but my mom as she was my best friend and I couldnt understand why the system and the nursing care gave up on her and others,since my mom passed away in Oct 2016 five days after my birthday and it has taken its toll on me we as caregivers become their heros my best regret I wasnt always nice to her god I have regrets you just take day by day when you see her hold her hand and talk about the things that made you both happy I miss my mom
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