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Wednesday, April 4, 2012

Displacement

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Displacement: What Does “Home” Mean?




Dementia affects every individual differently. But there’s one idea that persists in the minds of just about everyone with the disease: home.


“I want to go home.” “Can you take me home?” “I won’t be here tomorrow; I’m going home.” “I have to get home to make dinner/take care of my mother/feed the dog.”


It used to distress and upset me when my mother would ask where her home was while she was living with us. Then, as I researched dementia, I learned how common the desire for “home” was, even among people who actually were home, and that when the person says they want to go home, it isn’t necessarily a particular home as such that they miss but the feeling of safety, security, the feeling that they know where they are and know that they belong there. What it really means is that they want to go back to a time when things made sense.

What does the idea of home mean to a person?


When we realized that my mother couldn’t be alone any more, we investigated several options. I considered a nursing home and actually registered her into one, but as soon as I left there I began crying like a baby and didn’t stop for at least an hour. I canceled the placement. Then we found an assisted living facility for her and moved her in for a “trial” period, which was a disaster. She felt abandoned, told people she wanted to die. We moved her back to her home. It was clear she wasn’t ready yet.


Our ultimate solution was to buy a multifamily house so that we could move in and bring her in with us. We could each have our own apartment yet be close enough so that we could care for her and try to keep her safe. This was my husband’s idea but I was reluctant. I loved our home and didn’t want to give it up. The answer we found was to rent it out, planning to move back into it at a later time. We found a beautiful three-family house in our neighboring city; we moved my mother into the first floor and we took the second.


We were three displaced people, trying to make a new kind of life in a situation we didn’t know how to handle.


I liked the new house and the neighborhood, but in two years I never really got to feel that it was “home.” So when my mother broke her hip last spring and it finally became apparent that she wouldn’t walk again and couldn’t come back to live with us, we found an assisted living facility with a dementia unit for her and began making plans to move back to our “real” home.


We’ve been back now since November. My mom has been in her place since June, and she seems to have settled in well. She still occasionally talks about going “home,” but never for long, and she doesn’t get upset anymore. I don’t tell her that where she is now is her home, but I think that she instinctively knows that she’s safe. If home is where peace of mind is, then maybe my mother does feel once again like she’s home.






19 comments:

  1. I do believe, as you said, that it's where peace of mind is. And again, the love that you and Tim have for your mom shows so clearly here. Your piece made me think of my mom and I and a similarity we both shared when we vacationed. Inevitably when we would get to day 5 of a 7 day vacation, out would come the suitcase in preparation of "returning home". It wasn't just to the physical house, but the life we'd left behind, the day to day familiarity and routine. Home is the life that surrounds you and in that early time of Alheimer's with your mom, when it was taking things away from her (for lack of a better description on my part) maybe it was then that she was was strongly feeling that missing "home" piece.

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  2. Your inherent kindness is showing, and it's beautiful. I love how your mother's happiness and sense of security has guided your actions and that you look to her needs and reactions to help you determine each step.

    The road your family is on is as uncertain as anyone's, but your willingness to adapt as needed must certainly be key to your mom's feeling of safety. She's lucky to have such a wonderful daughter.

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    1. Thank you, Beth. I appreciate your comments so much. She has been wonderful mother to me, too.

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  3. This is making me cry -- far too close to "home" for me, if you've read any of my past posts about my 93 yr old mother. She has no dimentia. But she is failing physically, her balance is bad, but she wants to stay in her house. Her home. I could never put her in a facility, but I live an hour away with small children, so we muddle along, with caretakers who come and go and I try to bring her meals etd.

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    1. Sandra, I can appreciate what you're going through with your mother. Mine always said she wanted to stay at home, that she never wanted to go into a "facility," and I feel that I honored that desire as long as it was possible. Eventually the move to AL became necessary. Luckily by that time she was at a point where she could accept it. I wish you luck in your caregiving.

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  4. Before my mom died, although she was never diagnosed with dementia, she would have short periods now and then when she seemed like she was in another world. She was in rehab after her hip replacement surgery and one night, the staff called me (I'd just been there earlier that evening) to come calm her down. She kept telling the staff that she wanted to go home - that it was just across the street. Being an adult caregiver for your parent(s) is not easy but I am grateful for the time I did have with my mom. Your blog touched my heart. If you'd like, visit mine at www.dianeweidenbenner.com

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    1. I"m sorry to hear about your mom, Diane. Going through and recovering from surgery can be very hard on elderly people. I'm glad if I've been able to make things a little easier for my mother. I checked out your blog and it looks wonderful, so I will definitely go back and get better acquainted with it. Your photography looks lovely. And I'm a freelancer, too!

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  5. Home is truly where the heart is isn't it. I think you've found a wonderful "home" for your mom and I know how you agonized over it.
    Pam (look at you 31 followers!!!)
    Quig Land
    A Pirate Looks Past Sixty
    Pirate Knitting

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    1. Yes, I'm happy with the place we found for her and with the way she's settled in there. They give her wonderful care. Thanks, Pam.

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  6. So sad. I feel for you and your mom. I hope the best for you.

    I'm a new follower from the AtoZ challenge. It's nice to meet you!

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    1. Thank you, Margo. I appreciate it. Nice to meet you, too! I'll stop by your blog, too.

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  7. My mother has dementia. I struggle with it constantly because she says things that can be very hurtful sometimes. You have my sympathies.

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    1. Thank you, Michael. I'm sorry about your mother. I'm lucky that my mother has not yet exhibited those symptoms, but there are a few people in her place who do, and I can see how difficult it is for other people. Just know that it's the illness talking and not her. I wish you luck and blessings.

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  8. I'm very glad I found you through the a-z. Your blog is honest and heart-felt and very wise. Thank you for sharing your insight.

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  9. Oh my gosh, Elaine! I would so love to have you over for tea and one of my close-but-no-cigar baking attempts. Your blog is so heartfelt and beautifully written. My Mom just passed last August so I can relate to so many of the things you write about (she had dementia, so I "get it). Your strategies and suggestions have heart and make good sense.

    When can you get here for tea? :-)

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    1. Thank you, Denine, and I'm so sorry that you went through this with your mother, too. I hope that you had good support and were able to take care of yourself, too. As for the tea, I'd love to come. How are you from Rhode Island ;-) ?

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  10. I loved the way you summed it up in the last sentence - home is where peace of mind is. I'm sorry to hear about your mother. My aunt suffers from dementia and my cousin struggles with it. We do too. Each time we skype she asks for my dad who passed away 2 years ago. And when we tell her it upsets her and me so now I just tell her he's sleeping and he's okay. I guess in a way that's true. Thanks for sharing this with us.

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  11. So sad and beautiful, thank you for expressing yourself through writing.

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