When caregivers live in "their world" is there a chance of their losing touch with the non-dementia universe?

I recall when my sons were young they had some marvelous pre-school/kindergarten teachers. These people did what they did very well. However, on occasion, as an adult away from the kids, I was afraid they'd give me a sticker for doing something well.

Of course, some personalities are drawn toward certain professions, so maybe these people would be top-of-the-world perky no matter what they did. It's hard to say. But I'm comparing them with caregivers because people can get so drawn into their daily world – and that includes caregivers – that they may have trouble switching gears in other situations.

When we are constantly surrounded with a certain type of person/activity it will affect us to some degree, but we need to reacquaint ourselves with the rest of the world fairly regularly to keep in touch with reality.

I think there is a true danger in getting so drawn into the dementia world by 24-hour caregiving that depression and fear become part of our lives. Agoraphobia may become a problem if the caregiver seldom leaves the house, because it may eventually become too “foreign” to leave the house at all. Before depression or fear of going outside happens, professional help should be sought.

It does seem to me that if someone living with their loved one who has dementia is starting to feel like they are struggling to hold on to their own personality, it's more than time for respite care in the form of in-home caregivers or assisted living. The caregiver needs to get out in the world beyond caregiving to stay in touch with reality.

This is one of the most interesting questions I've seen in awhile, though I was just asked the same thing last week (in person). So, none of you are alone. Share with each other. But please do everything you can to maintain some life outside of caregiving. It's essential to your mental health.

Take care,
Carol

This may seem like a strange way to answer this question but this scenario makes me think of two actors is work I enjoy, and the differences between their approach to their craft. Daniel Day Lewis and Anthony Hopkins. Plez realize that I'm only talking from the perspective of what I THINK I know about actors and acting since I am NOT an actor and only know what I read about.

I've heard that Lewis, when he was coming Lincoln, insisted on staying in character the whole time (l've heard of many other actors also doing this.) If any of you saw Gangs of New York (eww!), I can't imagine him staying in character during the entire filming of that role (shivers). I've heard a lot of actors who use this style of acting actually end up having a psychological and physiological price to pay. His performances are outstanding, so his technique seems worthwhile.

By contrast, it is my understanding that Hopkins, an actor who is just as intense and just as marvelous basically walk in and out of the character during filming. And when he goes on at night as Tony, not as Dr Lecter.

My overall viewpoint is that method actors can seem to lose a little bit of reality in their process and have to exercise great control in getting a grip in order to get it back. I don't offhand know what "the other way" is called, but it seems a little more comfortable to me.

So, when dealing with infirm elders, especially dementia, I ask myself what I want to be like when I'm not taking care of them, like when there may be asleep. My answer is always Anthony Hopkins not Daniel Day Lewis. So, when I interface with my caretakee, I use Tony as my example and model my behavior after that. Which is to say, l work "my scened" in actor mode and "go home" as me (even if that just means the nextdoor bedroom.

You know you just opened up a whole new door for me. A scary door! Have been taking care of Mom now for over six years. She doesn't have true dementia per se. However she does have her own little world that she lives in. I find it harder and harder to live in the normal world, and in hers. When everyone who visit's says, " your Mom is sharp, she's all there". They only see a little part of her. Yes she remembers stuff from years ago, but a lot is missing. She was once a good cook, yet now if I make some of her old recipes she wills say " what's this, I won't eat that! ". When I tell her, she used to make that all the time she says "I'd never make something like that!" Likewise she does not remember a lot of my childhood. Yet she has memories of things that never happened! So living with her, makes me wonder about my own sanity much of the time. Is it her, who is " with it", or is it me? Sometimes, I just don't know anymore!

I can relate to this. I just keep telling myself to stay strong and have patience.
I also try to keep on top of other things going on in the world. If only by reading, TV, computer, phone conversations. When I get tired I find myself getting iriritable and resentful.
I recently went to a picnic with friends who are very active with traveling, ballroom dancing etc. They look wonderful and are quick to smile and laugh. None of them are caregivers as I am with my 98 yr old father who lives with me. They listen to me and try to offer advice. I try not to dwell on my situation because I don't want to be a downer, especially at a social function. All of us have something going on in our lives, whether it's with parents, children, grandchildren or heath issues. I recently found out I have to have hip surgery. So this will be another thing to deal with for myself and then care of my father while I'm in the hospital and then rehab.

I guess we have all had these same questions and fears. It almost makes you wonder if it is "catchy" is it rubbing off on me? I care for my parent and have for many years because I am the sibling at home and not working an outside job. About a year ago my older sibling told me that when my mother passed, I would need care for myself as I would then also have it. This was a matter of fact conversation and she is a college graduate and in her late 60's. I was shocked and taken back by what she was saying to me! I believe she came by this knowledge through a co-worker. I have to say it REALLY ticked me off! How dare she say something like that to me!

We do get into a rut and the way we have to deal with our parents and yes it does feel like there is a "residue" of sorts but I think that is because we no longer have a life of our own. We live and breathe caring for our parents and put off our own medical issues and wants and desires. I for one am determined to change this situation in my life and seek a college class to attend, begin working on some hobbies that I have dropped and begin a new one. I have asked another sibling to begin coming over for dinner every week and I want us to start playing cards or scrabble as fun and to use our brains a bit more. I may pull out my "Spanish Learning Tapes" and see if I can learn more words than "Hola and Adios."
I already exercise and have lost over 30 pounds on my stationary bike and feel great juicing fruits and veggies.

I guess what I am saying is I will fight this dementia or Alzheimer's the best I know how. I realize I cannot just catch it by being around it, but if I keep my brain working, learning new things maybe, just maybe, I can hold it off, be a good caretaker, and feel better about myself.

I have come to the realization that my life is passing me by and I have lost a lot of precious years with my daughter that I will never regain, so I better get busy and get back into life while I still can. Mom is just waiting to pass away, she has lost her will to live since my fathers death, I am not going to sit here and wait. I love her with all my heart and will be here everyday for her but my outlook has changed, I want to live!

Yes, just yesterday I was calling a company and when the person answered the telephone I couldn't remember what I was calling about. In addition, many times when I, for example, go into the kitchen I cannot remember what I went there for when I get there. I think it is such an emotional strain seeing someone (especially a family member) being like this, that it sort of numbs us. I've heard taking turmeric can help with memory, etc., and it's suppose to have other health benefits as well.

Thank goodness for the internet! I use forums a lot to stay connected with the outside world. I use both support and hobby forums. I also play multi-player online games. Some even let me communicate with other people using a microphone. It gives me some outside contact and allows me to escape reality for awhile. I am also trying to find a local support group since I still want in person human contact. Fighting loneliness and depression is probably the hardest part of caregiving. Take care of yourself any way you can!

Yes, great topic skinonna! Fortunately I don't live 24/7 with my mil either but every night after I get back from making her dinner, sitting with her while she eats (which can sometimes be an agonizingly slow process), helping her get washed and ready for bed and then finally tucking her in, I always need some time to "decompress". It's not the physical work. It's the mental and emotional stuff that leaves me drained. I find screaming into a pillow sometimes helps.

Hi Skinona. Not sure I can answer your question but if it's any comfort to you, I have to very same fear! I do live with my mil, at her house for 3 yrs now. I have also been sucked into the dementia universe! I am able to leave for a few hours at a time thanks to her lifeline button.

People tell us to go along with the delusions but I am trying
to hold onto any part of reality that I can! I do take part in a few basic social activities but find I feel slow & out of touch with conversations...:-P Just praying this doesn't last much longer. Or I will be in need of care too! ;-)

oh my goodness I was just telling someone this very same thing. I have two guys my husband (Alzheimer's) and my dad (dementia) who I care for and have very little contact with the outside world.