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For the past 20 years I have visited Mom every week. She used to enjoy visits and we would have lunch and talk. As her dementia got worse, the visits became unbearable with her negativity and being difficult. Now, at 100, she is in AL 40 miles away and seems to have settled in and made friends. For her, I think this is about as happy and content as she has ever been for the past 30 years because she lives minute to minute. (That's not to say that when we talk on the phone - 2 minute conversation, if that, if she answers at all, all she does is complain, which is just her and always has been.)
She is totally a creature of habit and routine now. Our visits seem to disturb her more than comfort her. We have to just "drop in" because she doesn't remember if we tell her we are coming. If we go to have lunch with her, it means she can't sit at "her" table with her friends and makes a huge fuss. She doesn't want to go "out" anywhere and gets uncontrolled loss of bowels from the upset of it. She has a new simple life, and we simply don't fit into the routine she is comfortable with. The last visit from my sister she raised a fuss about eating at a different table, pooed her pants and sat in it at the table. If we just go for a visit, we sit and look at each other while she asks the same question every five minutes and there is no other conversation and talking to her about anything, she doesn't follow it. She lies down, gets up, complains about everything and we can tell she wants us to go. Our visits are down to about 30 minutes because its so uncomfortable for both of us.
So, do I continue to make an 80 mile round trip to spend 1/2 hour when she doesn't want me there after five minutes and won't remember it a few hours later or do I cut back. I bring her food, snacks, etc and she doesn't even know or care where they came from, or notice they are there except when she eats them. I understand her dementia is taking her away. I just feel guilty when I don't go, but I have health problems (more than she does) and it takes me a long time to get things done at home so I'm beginning to dread taking 1/2 day for 1/2 hour that neither of us needs, wants or enjoys. I check on her with the nurses. I'm going to take her to the doctor next week, and to the hearing aid place the following week.
I was thinking of cutting back regular visits to every two weeks, I'll bring her snacks, etc and just stay 1/2 hour? I just don't know what to do.

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Yes, Jenny & Jane, get her to a doctor. Mom started to get that way also - verbally aggressive, even pushed one of us, gave us awful looks like she was going to hit us when we touched her. Its part of dementia not part of the personality. Her doctor put her on Zoloft and it worked wonders. She is now calm, not as obsessive and more like her sweet gentle self. By all means, get your mom to the doctor!
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Jenny and Jane,

Your mom needs better meds. Get her to a geriatric doctor.

Pronto!
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We are having a very difficult time with aggressive and combative behavior with my Mother. The ALF where she lives acts as if she's the only one with dementia who acts this way. She is a very sweet lady most of the time and then all of a sudden she flips out. Is there anyone else out there who has a parent who is combative , aggressive and sometimes violent behavior.
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Your good kids its clear you with taking her to doctors and other visits can cut back just call more but not at meal hr s social time there are two or more visitors a week she has memory prouble may think she sees you a lot more often or she wants the space in your life so when she passes you will live with her lose what a nice mom as for her snacks when you can't come call her and mail them every one loves mail if she can't read send her pictures cards candy drawings mail is almost better then a visitor its something her friends will wish there kids would send
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Thanks pargirl. Your mom's mind is in the same place as my mother's. Dementia scrambles the brain and the "anchor" that holds their memories in sequence is no longer there so the thoughts just roll around in their heads and come out randomly. Mom's latest is calling either my sister or me during her "sundown" time every few nights, all upset, and asking how we are because she has imprinted on her brain that one of us has either broken a hip or ankle or both. (I broke my ankle 4 months ago and she can't keep the memory straight.) A few years ago it helped when we wrote things on her whiteboard or on paper so she could refer to them but now, she either erases it, or puts it in a drawer or when she reads it, her mind tells her something different, not what is on the paper.
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AmyGrace I hope your mom has care now. Sounds like she needs it. If my dad hadn't been the main caregiver my mom wouldn't have been able to stay by herself when her dementia wasn't that bad 5 1/2 years ago. It was only because of my dads heart attack and his recovery that she wasn't able to stay in the home. She just couldn't understand that he had had a heart attack and needed his rest. She would ask "WHERE is YOUR father" when he was in the hospital. I would tell her "mom, we just got back from seeing him" and she would say "Oh, I know that". 10 minutes later she would say "Boy, your father sure has been gone a long time. I'm furious with him for leaving me here and I'm hungry", which we would have just eaten. I'm glad you got away for a few days. Sounds like you needed it. I would LOVE to get a dog/puppy but just don't have it in me right now to deal with Dad and mom and 2 grandboys as much as I love them all. I'm pretty wiped out. But gee, I think that's great about training your dog. Will she come visit me??? :)))
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Include lonely residents in your visits? Share the love? Would mom recognize you if you sat at someone else's table for lunch and saw her afterwards?
That won't work because it is her home, her friends, her space.
So, do cut back, keep checking in and visit with the caregivers more.
Looking way back, was it hard for you to leave a child at school when they forgot about you and went off with their friends, happily? Or, was it hard for your mom to leave you with a babysitter when you were little?
Enjoy the time as much as possible, take care of yourself, try not to suffer guilt.
Thanks for asking your question. It made me think.
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I usually call daily but most of the time she doesn't answer, or she doesn't put the earpiece on her hearing aid, she keeps saying I can't hear you and then hangs up on me. It's impossible to teach her how to use the phone so she can hear, we've tried everything. Funny, because the last three days I haven't been home and she has left 4 messages crying and scolding me for being mean hanging up on her ( I'm camping, haven't even called her.) Wednesday we go to the doctor. She will fuss and complain, maybe get diarrhea and I'll have to explain to her six times where we are going, etc. The following week I'm going to bring my poodle puppy to visit with Mom. If she isn't interested, I will go to the community room and visit some of the other residents. I'm planning to train her as a therapy dog, and this would be good for her and the residents. She is very friendly, soft and happy.
Mom's deterioration has been escalating over the last three months. If she lives much longer her dementia is going to force her into mental care, but more than likely she will need a nursing home if she becomes any weaker. No one should have to go through becoming a vegetable and losing all their dignity like this.
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I like ADCaregivers suggestion, as weekly visits are necessary to ensure proper care, but it doesn't have to be you. You could visit once or twice a month and when you're there, make your own routine, ie: be the one who ALWAYS rubs her shoulders, brings chocolate covered strawberries, sings a certain song, or reads certain verses. Ask if the staff is doing any artwork with her. You could be the one to bring crayons and big paper. It can be as simple a routine as you want, and isn't dependent on taking her anywhere. But the routine is as much for you as for her. To make your time with her valuable to both of you. You want to feel that, by your effort, you have contributed in a meaningful way, to her comfort, pleasure or ease.
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The only thing that I can add is that my cousin is in a similar situation (except that her mother still wants to hear from her) but she lives even further away than 40 miles. She says that calling her mother takes some of the pressure off and keeps from disrupting the schedule at the nursing home. Of course, this would depend upon the hearing ability of the person in the home.
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I think its great that she feels so comfortable in her surroundings. So many don't and absolutely detest their stay and environment. If she's happy and your visits disrupt her day or cause her distress from her perspective - I would give yourself a well deserved and guilt free rest from the visits.
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(sorry - auto-sent).
Just being seen and acknowledged as a human being can lift an older person's mood. Those kind of interactions also don't have have any emotional baggage either. I found that sometimes just being with the older ladies and having tea after a rough visit was a wonderful lift to my spirits (most of them did NOT have dementia, and I can't tell you how delightful it was to be talking to a 99 year old who was sharp as a tack, with a sense of humor).
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I don't know how much you enjoy the company of older people in general, but if you are a sociable type of person maybe ask if there are other people that could use a friendly visitor while you are there.
I've found that the place where a friend with dementia lives there are wonderful people that enjoy a few minutes of chatting. The elderly are so often overlooked and ignored that just being
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Yes, visit when it is convenient for you. Take thing ]s to her for her confort that you feel she will enjoy.Most of all tell her how much you love her and hug her. We never lose the sense of truly being cared for.
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Agree about varying the time of your visits! Best way to have all the staff see you and know you are watching. You are paying them to take care of her, make sure they are. If you pop in at different times unannounced, you get to see what's really going on, they don't have time to "stage" for your arrival.
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Schedule visits on your timeline. My family and I alternated visits with mom in the nursing home, so we could maintain good care and the nurses never knew when we were coming. As suggested, I would go when there was Bingo and play along, I would do my mother's nails. Eating dinner with her was totally out of the question, she became confused, so I did not visit when they were eating. I like the suggestion that you could find things to do for yourself while you are in her town - pedicure, massage, shopping, etc. You have to arrange your visits around your schedule and the most important thing, take care of yourself!! Good luck. Consider the doctor visits as your visit as well, twice a month or once a month would be enough. Just be sure the nurses know you are checking on her and you can call them as well.
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My best friend's mother is a real piece of work. She was never a nice person, very mean to my friend and all of her other children as well. She even called her own grandchild a "chink" - that's right! (He was adopted from Korea). I asked her why she would visit her when this was how she was treated and a total waste of energy as her Mother never appreciated it anyway. She told me & I share it with you: "I do it for myself, so I don't have any regrets." That said, my friend has not visited her Mother in over a year.
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I agree with getting it down to once a month, which if you are taking her out to dr visits will end up being more. Make the trip a pleasant one for you, perhaps you could drive down in the morning visit her for 15 minutes - take yourself out to lunch or shopping and stop back to drop off snacks before you drive back - that way you have seen her twice at different times in the day - and the shorter visits may be less stressful on her and it would be a more productive trip for you.
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(((((((amygrace))))))) You said you have health issues yourself. You need to look after you. I have health issues too and have not seen my mother since we moved her the end of January. These past few months, I could not see her. Mother is 103 and I am 77. She is well looked after and in the past few years I have ended up having more contact (by telephone) with the staff of the facilities she has been in, than with her directly. I respond quickly to any concerns they have and promptly provide things she needs when I am informed. Normally I would make the 5 hr. trip 4-5 times a year to visit, but have not been able to this year. The staff know who I am and that I am keeping an eye on mother. Visits with her need to be short for both our sakes. She has BPD and is narcissistic and tires quickly, and the visits are stressful to me which exacerbates my health issues. In fact the life long stress may well have caused them. I always plan things to do just for me when I am there.

Let the guilt go. It is what is called false guilt - not due to you doing anything wrong, but to you fearing you are not living up to the expectations of others. You are there for your mother when needed. Figure out what makes sense to you with regards to visiting and keeping contact with staff. Those who have not walked in your shoes need not make negative comments. Take care
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KDS0125, I think most people are age were raised on guilt, especially women. We were taught that we were supposed to take care of everybody else first. Our own health issues are teaching us that we need to put ourselves on the priority list too, or else we won't be able to be there for ANYBODY! I finally got the message, but have done some permanent damage to my body in the process. I am still working on being more peacefully and accepting of my own limitations, to stop seeing it as being selfish, instead to see it as working in the highest good of everybody who depends on me. There are the times you really need to be there, then there are the times when you know you should take care of yourself and trust that your loved ones are going to survive while you're doing it. The wisdom is in knowing the difference and being at peace with it. Many of us are in the same boat. You aren't alone.
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I struggle with this ~ guilt/obligation vs. self preservation so everyone's replies have been super helpful for me as well. Thank you AmyGrace for posting.
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there are so many wonderful suggestions..
definitely stay away at mealtime...consider less frequent visits
do come when there is some sort of "event", you might enjoy too..
my mother loved to have her hair fixed or nails done(if you do these things)
if I were in your mom's city, I would enjoy being that contact person who visited and kept track of things...good luck
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Yesterday my mom came to my house for the first time in a long time. It makes a two-hour drive for us when she comes here. But I wanted her to see her great-grandchildren.

She had the strangest expression on her face and wanted to go home as soon as we had eaten. I really believe she is happiest in her snug little room at the AL with all of her creature comforts right to hand. I have also noticed that she doesn't really enjoy long-ish outings (2-3 hours). So, I think . The best for now seems to be a short ride with lunch or ice cream.

How often? I now go every other day when we are in PA, which is half the time. And I have no guilty conscience when I don't go because at the end of the day, she doesn't know whether I was there or not. So, a win-win really..
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AmyGrace, it is good to see that you spent some quality time with your husband and children, so important. Have you contacted Hospice to see if she is eligible for their services? Even if her labs and Xrays have come back normal, she may still have multiple issues that could qualify her for their daily care. that could also help ease any worries about having someone to keep an eye on her, her health; and Hospice will also call you each time they visit and give you an update as long as you ask them to do that; they will.
Even tho your mom has battled anorexia her entire life, remember that so many ALZ patients at that advanced age will lose all desire to eat or drink, it is often times part of their transition into death. it is not painful for them to stop or restrict their eating and drinking. Research shows that when they do stop eating and drinking, their bodies will release endorphins which actually make them feel better physically. At her age and her ALZ, she truly isn't being 'vague', she probably honestly can't describe how she feels. My 90 yr old father fell on 31 March and shattered his right hip so badly that it could not be surgically fixed. 12 hours later he forgot he broke his hip, he thought he was moved to the hospital because he had an asthma attack. He said he was not in pain, he did not feel pain like others would due to the ALZ. Not ALL patients, but so many just don't feel pain, nature's way of protecting them, I guess. He stayed in good spirits, talking, just enjoying the attention of the nurses, but didn't even move around like someone who had a shattered hip only hours before. Do speak to Hospice and they will come around and give your momma an evaluation; your mom's doctor can request Hospice come in for you to evaluate and if your momma is eligible. This could solve a lot of the 'how often to visit' worries you may have as well.
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Like "Sandwich" wrote: think we get caught up in what OTHER people might expect us to do based on how they think it ought to be handled. Like what will the nurses think if I'm not there, or what will so-an-so say if I only visit every 6 weeks?.....The answer is: who cares
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If you feel your Mom is getting good care and visiting so often then don't. At this point it seems like the visits are because you think you should than your Nom wants them. So don't feel like you need to go so often.
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But this has been a 20 yr illness sasperella, just a step back so they can both get some air is what I think she's saying they need?
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My mother passed away last week after only 6 months of total vascular dementia (she was bedridden and couldn't speak in the end). What I want you to remember is that it's not about YOU. It's about the patient who is suffering from an incurable illness who may or may not be feeling anxious at not remembering you or being able to make coversation. Your mother may be as embarrased as you are. So, you must try to be the bigger person (until your time to be demented comes along) and think about what would make it easier for you when she is gone (which is inevitable). I always made decisions that I knew would comfort me when she passed away, and now I do find a lot of comfort in having been patient and tolerant and trying really hard without knowing how effective my efforts were. It is also worth remembring that it is the disease that you find frustrating NOT the person.
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I can "hear" your discouragement, Amy. I hope and pray that you'll find yourself more at peace once you put your decision into action. I'm willing to bet that the times you visit in the future will be much more satisfying for you both. God bless.
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@PeaceCorps1 whether Amy knows it or not she is thinking of her mother and what's in her mothers best interest for her peace and continued contentment. If I end up with dementia and do not want my family to come and visit me then I pray that they will honor my wishes.
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