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I have a really, really hard time getting things done because Ninny (93 with vascular dementia) is nearly constantly looking to me to amuse her and follows me almost all of the time. No matter where I stake out some space, I can expect company pretty much immediately, and if I get up and move, unless I am still directly in her line of sight (cleaning for example), she'll go looking for me in about 5 minutes' time. Sometimes I have a hard time even getting away just to use the washroom without her getting confused and thinking I have left her alone. I feel like I'm tied to her by an invisible leash, and sometimes I just want to get away from those sighs of discontent and nagging sniffles for a few minutes!
Once in a while she will retire to her room to watch some television or read a magazine, but I'd say she is actively seeking my company for at least 6 hours a day, and I need some space. Even if I put no effort into amusing her and just do my own thing, she will sit for hours on end in my immediate vicinity and stare off into space. I suppose it must be boredom that makes her do it (perhaps she is hoping I will do something interesting) but she never wants to do anything except read, watch TV, and see what I'm up to - and for some reason, watching me do absolutely nothing seems to top her list of ideal pastimes. I can't seem to get her interested in any activities, independent or otherwise, and I'm not sure how to encourage her to be less clingy and what kinds of hobbies might catch her interest so I can have a little 'me' time. I'm going to guess this is normal but I'm not sure what, if anything, I can do about it. Any advice?

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Linda, you were fortunate. Ther's typically no one standing in line to help. I'm sorry for your loss and hope you have learned to live again.
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Stafford, I am so sorry for you both. I worked midnights for the beginning years. It was rough. I was sleeping on a bench in the lunch room for my breaks. Then he started running off and I was afraid he would wake while I was gone. My youngest daughter told me to quit, that she was giving up her house and coming home to help in August 2010. I did it until he died February 2014. I had grandsons who were in their late teens and their friends who helped a lot. I was fortunate.
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Linda McCarty - I'm doing the best I can. I'm not perfect, I'm not a nurse and I never ran a nursing home. I'm learning as I go & adapting to new situations. I rarely have the time to vent on this site, but I did that day. I KNOW it's the disease. He was wonderful before the disease started. We've been married for 35 years. I still can't believe what's happened to him. He has not been an easy patient. It's just been recently that with a med change, he is controllable. His doctor almost called the police during an office visit. Am I considering this situation a blessing? NO. Would I want to do it over again? NO. Am I a bad person? I don' know. Can I afford $6-7,000 a month for someone else to strap him in a chair? NO. We're all different caregivers and they're all different patients. I'm tired, lonely and sick of being stuck at home, but 4 yrs into this, I'm still here.
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some people can and will deal with it all, but others are just not capable of doing it. and if you find is so unbearable or wearing you down, a nursing facility would be better for both of you. He won't feel so combative/frustrated and you won't feel the same way towards the disease that took over his mind. My father has been in a nursing facility almost one month, even though he thinks he has been there since April (he went in August). We still have not told him that he is not coming home. it will probably just upset him or make him mad, but bottom line.....my mother can no longer handle him and no one can quit their job. they don't want anyone else living with them. problem resolved.
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Let me add...He was unable to do anything for himself. Yes, he had accidents that I had to clean up. Didn't like it...had to be done. I had to feed him, dress him , bathe him, put him on the toilet and coax him to go, put his pills in his mouth, shave him, cut his hair (that normally took 3 days-top, sides, then the back), take his dentures out and clean them (and hope he wouldn't bite). If you don't go into caring with absolute love and devotion; caring will destroy you.
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Stafford, pardon my being forward; but you sound deeply annoyed with your loved one. How sad. My perspective was that all the good was him and all the bad was the disease. It worked for me.
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Luanner, I've been thru the shadowing stage - unbearable. Started using gates to restrict him, locking doors behind me, etc. eventually he got too aggressive. Showed dr videos of his aggression. Got a prescrip for a Posey lap restraint & a change in meds. U can restrain him or wait for that behavior to stop and be replaced w/new ones. Like drooling & in diapers -- there's nothing like trying to clean a grown man's butt. My husband is 63 & at least 5 yrs into FTD. I am 68. I don't apologize for drugging him & restraining him. It gives me some time I don't have to be fighting w/him. Dr said nursing home would do the same thing for thousands of dollars per month. He is late stage - 1 yr maybe 2 left. I hope ts see him thru to the end.
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Yes, it's normal. I believe it is a security thing. Everything in their world is changing and they believe you to be the one perhaps only unchangeable constant. It's just love on a new level.
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Gosh mum has dementia and im the one "shadowing her". Yeh when i first got the diagnosis i didnt know what to expect so i guess i was following her everywhere to see what she was up to! Im better now and let her be as she was calling me the "gastapo". My friends brother had this with his mum she used to follow him to the bathroom i think its more common with alz than vascular dementia?
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The shadowing and staring were very difficult for me. I felt like I was under a microscope all the time. Now that my Mother is in an AL facility I do miss her but truthfully it was a little much for one person to handle.
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My husband shadowed wherever I went. I was his security. Alzheimer's makes the victim's world smaller and smaller. I considered it a compliment that he still included me in his little world.
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I agree beechgirl, you don't always realize that they have a brain disorder. Of course if mom was in her right mind she would not be needing to be with me every minute. My mom was scared and I mentioned before that I slept with her for a full year and then another year went to bed with her at 8 pm every night and stayed until she was asleep. If you can remember when you were small and you were scared, it always helped to find mom for comfort. We are their comfort and they want to see you and be by you to feel that comfort. It seems like such a small thing, but you are really being selfless and giving to another in need. So hard for us caregivers to know how they are feeling, but it is a battle they are fighting.
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This is my second time answering. If there is anyone out there that I can help to.not have the "what if's" when it's over. As hard as it is to deal with when mom is gone and you have some time to grieve first and then think back on the circumstances of her illness you don't want to be left with the feeling of.how did I not realize? Knowing what a great mom she was, she would never think of being a burden . In fact she was the glue that held the fmily together. Being a care taker is so all encompassing that you loose sight of the real issue, which is to help mom as she helped you when you were little!
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My God bless you, Sujean.
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If I went out of the room, my mom was asking where is Suzy. Then someone would bring her to me. I mostly had her with me wherever I was, but then she would get up and leave and not know where I was. She didn't want to be alone, and would start crying and saying I can't be alone. Because of them feeling so mixed up I am sure it was scary and knowing I was there was a assurance that things were okay. When you are going through the situation it seems like you can never get a minute to yourself. Mom passed 2 weeks ago and it feels very lonely and quiet. Being a caregiver is very selfless and you have to realize that you do make a difference and that they do need you. Sometimes its just to be near them, and often times you forget that they have a disease and are not normal. I know that my mom appreciated everything I did for her and I was glad to be of service to her.
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Missing your mom is the worst part. She is there, right in front of you,yet she is gone. One of the most heartbreaking experiences anyone can go through. My mom had to have me within her sight 24/7, she would come into my bedroom multiple times a night calling my name. It annoyed me , now I realize she just needed reassurance that I was there. She was afraid. I'm sure she wasn't annoyed with me when I called out for her in the middle of the night.We'd watch TV and she'd stare at me. It's a very complicated disease. You feel as if you've run into a brick wall. All I wanted was " my mommy back", unfortunatelyI had to come to terms that it wasn't going to happen and figure out how to go on. My only wish is that I would have realized these things earlier. It would have made for a lot less stress for everyone!
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I think part of it is that they lose concept of time. What may be 5 minutes for us may seem like an hour for them - that sort of thing. Dad will do that sometimes for Mom, but it has lightened up recently.
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Well Jill, we aren't all able physically or mentally to be the person you seem to be. God bless you for using your gift! But the 24/7 is not in the option column for me right now. My Mom who has always had to have everything about HER, is in a retirement home, which my husband and I help pay for. I go spend a few hours with her 3 or 4 days a week, do her meds, buy her snacks, dogs food, take to the groomer, etc. etc. Altho Moms dementia is slowly getting worse, she seems to be more accepting than I anticipated.
She is APPALLED that she can't remember something really good that happened a couple hours earlier. But seems grateful that I can tell her about it over and over because it makes her feel good again. ( like a visit from a favorite nephew from another state.)
I have to hear her stories over and over too, but just listen and agree with her rather than hurt her by trying to stop her from telling it again.

I'm grateful that she seems to accept the time I do spend with her. She also refuses to make friends and socialize with the 30 or so in the home. So when she complains that she has no one to talk to, I say "who's fault is that?" and she knows what I mean. No sympathy if she isn't trying to make friends. She took months in her room eating Cheerios and breakfast bars before she started going downstairs (on an elevator) to meals. But she finally gave in and started going.
She doesn't want to leave her doggie for 30 min. Have a hard time getting her to leave her for church. There isn't any in-house services.
Enough venting for today. Thanks everyone for comments that keep us all hanging in there when we feel sometimes like "I don't want to do this (alone for me, except for accepting hubby) anymore!"
Hugs!
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As helpful as it is to know that we are not in this alone, it's hard to answer a specific question with a specific answer because everyone is different. What works for one person may not for another. She constantly has to know where I am, even when she is with my husband or other family members. She will come into our bedroom in the middle of the night to make sure we are still there. With my mom, to try and engage her brain, I tried the color books; they just sat there. Tried doing them with her, no luck. Tried Boggle, which she used to love; no interest there. She can't read a book anymore, which she loved more than anything, because she can't follow the story. No interest in TV. She is very mobile with her walker, and paces around the house. When she is sitting, she just wants to question me over and over about the same things. She is very fearful and paranoid. Afraid someone is going to come and kick her out of the house. I don't know where that came from, unless it has something to do with being a child of the Depression. This morning, at 3:00 am, she had the front door open and was calling the cat. Time to get baby locks for the door (we thought the lock that is on there was too hard for her to figure out). And Willow, bless your heart, I'm glad your mom still does things that are funny and adorable. We have apparently passed that stage. The Dr. had her on Lexapro for the Sundowning problem, but when we got her out of the nursing home (broken hip) and brought her to live with us, the problem seemed to go away. I think all that really happened was a change from melancholy and depression to constant questioning and mean spiritedness. Going to ask Dr. if we can put her back on it, because it does seem to get worse in the late afternoon into evening. Wow, didn't think I was going to write a book here - guess I needed to vent. Dementia is such a cruel, cruel disease. I hate seeing my brilliant mother reduced to what she has become. I miss my mom.
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and he's not interested in an adult day care where he can be around people his own age. My ex is the center of his world and I feel bad for him cause he's got no breathing room.
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At least she'll read. My ex's 90 yr. old dad doesn't even do that. We can't get him interested in anything. He even has my ex changing the stations on the remote cause he doesn't do that. He says " I'll just let you do it", and just sits and stares at you. He's a handful, but I care about my ex and my animals. That's why I'm back.
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I can totally relate to this in fact I didn't know there was a name for it. What I don't understand is even when my mom is with one of her caregivers and I have the same people on the same days she still wants to be with ME. I am just starting to feel a little less guilty for taking any time to myself. Daycare saved my life I have her going 3 days per week and it was difficult at first but now its easy she doesn't even look back for me or grab my hand. I tell her go have coffee and fun with your friends. The worst part of the day for me is when she is Sundowning which is happening more often now. It is very difficult to re-direct her and calm her down. I dread Sundays because I feel like I have to entertain her all day and if anyone visits she gets upset at not being the center of attention so I feel isolated and trapped. I tried the coloring book she doesn't want to do that either. She is more of a watcher then a doer and I can't relax because she constantly asks what are we going to do? However, Just when I think I can't do this one more day she does something funny or adorable.
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My Mom does not want me to go anywhere, or do anything. So I think it has a lot to do with being lonely.
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yes
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my problem is that my father is not in a wheelchair, would not like fishing, he is a hard man to please so we will take one day at a time. and with failing eyesight not much else you can do
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Sylvera, I haven't had this problem with my 90 year old Mother with dementia, however, her Mother did this same thing to her. Mother would ask my brother to watch his GM for a while so she could go outside to be by herself. It got so stressful for my Mom that she called her brother to tell him she couldn't handle it anymore. GM was put in a home. Looks like there are a lot of great suggestions here and I hope some of them will help you but you need time for yourself as much as anything. It certainly would be stressful for me or anyone to go through what you are. Good luck.
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You mentioned that she has vascular dementia. My mother has that at least according to the neurologist. It is not all the time, but just when her circulation is weak. He prescribed oxygen. It helps her.
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If anything, people with dementia want to be alone. My husband has his man cave which he retires to because he watches things I don't like. He sits outside in the heat because he thinks it is too cold inside, so I would not "blame" the clinginess on the dementia. Maybe she just likes your company and would like to help you with what you are doing. Try letting her help.
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My grams is the same way. Insecure, hates to have to need me, but cannot seem to not need me If I spend too much time out of the room she is yelling for me, or when I go check on her, scolding me and trying to demean me for not being there to entertain her. But if I suggest activities, she is not interested. Staring out the living room window, complaining, and blaming her her past times. I listen and let it go, taking what time out I can. I started sitting in the same room with my computer or a book. Which is still upsetting because I am ignoring her. What did she do wrong? etc. I have set up respite care and started taken extra time out. She takes a nap daily so this gives me a bit of alone time. And because she is up frequently at night to pee, I go to bed early so I can get a bit more sleep.

The less she is physically capable of doing the worse her insecurities and fears. It goes along with old age and feeling helpless. I empathize, but I also set up a schedule and stay consistent. Taking time out where I can.

I would suggest checking on respite care. Not much else to do. Especially when they refuse to do anything to entertain themselves. I am still learning about dementia, but from my interactions with grams, would have to say the ability to be creative and to entertain self is minimal. It is not a concept that works.

Wishing you the best.
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5:50 PM 6/25/2014 answer to help4Dad...
I keep telling this to all who have to travel this road...
It is confusion made worse by fear of being left alone, which is different from loneliness, but just as upsetting, ...and, depending on the stage, being with a group either in day care or AL or NSG home where lots of folks are about, may help.
But definitely the main care person has to have respite...to continue to stay effective !!!
What I learned in NSG school a long time back... is to try to be empathetic, not sympathetic.... try to look at her as a patient, not a relative, while you care for her and answer her many questions many times over patiently and kindly ... Your kindness and loving actions will directly decrease the fear in her...
Play a free-cell or spider game, or such, set her next to you to watch you play if needs be...
The game resets your thought-process quickly because it requires total concentration --- when you can get 5 minutes to do so... that helped me - it is a 5 minute get-away !!! back to sanity !!!
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