Assisted living, pt. 5
December 30th, 2006
This is the first entry I’ve written from my own home. Last night was the first time in two years that I’ve slept in my own bed. I’m having a decidedly mixed reaction to the present. My mother moved into her assisted living unit on Thursday, an experience that lived up to all expectations. I haven’t visited her yet, on the advice of the staff, but I’ve talked twice to her on the telephone. She is extremely angry at me. The staff tell me that she is doing quite well–although not participating yet in activities–and has interacted with the other residents on her unit. But it’ll be a long while before she forgives me.
I’ve gone over this and every other option in my head time and time again, and so I know that this is the best I can do for her, given her illness. But I still feel guilty and sad. Guilty and sad, over and over again.
Christmas was tough, knowing what was going to happen afterwards but having to keep it to myself. I told her on the day after Christmas that I’d be moving home on Thursday, and that I had no intention of leaving her alone in the house, so I’d made the arrangements for her at Garden Manor. She told me again that she would never leave her home, but softened when I described the place. I went to bed that night with a good feeling.
I spent most of the following day at the Manor, to see her new furniture delivered. (Her own bed was too large for the room, but buying new furniture worked out well. Her old furniture was pretty sad looking, and the new furniture could be delivered without her being disrupted.) I ran to Target and bought a comforter and several other necessities, then returned and organized her half of the room. (She is sharing with another woman.) I left the place with a very positive feeling. There are only 20 residents on her unit, and several of them were around, including a very flirtatious gentleman who kissed my hand. One of the CNA’s assigned to my mother–Donna–showed me around and warned me about my mother’s probable reaction to moving in. As I left I saw a group of residents sitting in the common area where a staff member was leading a discussion about George Burns.
The following morning–moving day–my mother rose and dressed and ate breakfast. I told her that I’d be moving home that day and that she would be staying at Garden Manor. She meekly said, “Okay,” and I made eyes at my sister, amazed that it would all be so trouble-free.
But it wasn’t. I should have swept her up at that very moment and taken her, but I gave her enough time to muster her resistance. About an hour later she told me that she’d decided that she wasn’t going to go. She was going to get someone to live with her in her house. She would not leave her house.
I made the mistake of trying to convince her, and then of bullying her. Neither tactic worked. She lay down on her bed in resignation and refused to go.
I sent a couple of desperate emails to the admissions lady at Garden Manor, and then went into my room and closed the door. I had a bit of a cry, over the bleakness of the situation and over the prospect of spending another day in this state of emotional suspension. I was relying heavily on my plans, I was longing for some respite from my caregiving, and there seemed to be nothing I could do.
Finally I got up and went into my mother’s room. I found a pair of socks and shoes, and said: “Here, let’s put these on.” She did, and I then got her coat. “Come on, let’s put this on,” I said. “We’ll just drive past the place, so you can see it.” “I’m not moving in there,” she said, putting on the coat. “I don’t have any make-up on,” she fretted as she moved toward the door. I nearly dragged my sister out of the den–she had given up on getting my mother out and was watching TV. “Get your coat–we’re going,” I shouted as my mother and I passed.
I tried to be firm but not dictatorial. We made the ten minute drive and parked at the front door of the Manor. While Liz helped my mother out of the car, I ran ahead and found the nurse manager, who took my mother’s arm and walked her to the unit. My mother looked a little shell-shocked but also pleased at the attention. We were met by Donna, who fussed over my mother as we showed her to her room. The unit is cheerful without being overwhelming: soft colors and calm lighting, with lots of room to walk around and a beautiful common room with comfortable chairs, a TV, a piano and a table for jigsaw puzzles. Its many windows overlook over the woods that surround the buildings of the facility.
“I’m not staying,” my mother said, once she was sitting in the new upholstered swivel rocker in her room. She looked at me. “How can you do this to me?” she said angrily.
This was the time to go. I told her I loved her and gave her a kiss–Liz did the same. Before we left, Donna gave me a big hug and told me that I was doing the right thing. “We’re going to take good care of her,” she said.
In our rush to get out we hadn’t even packed her clothes, so we now returned home and got them together, then went back to the Manor. I brought them in and left them with the nurse, who told me that my mother was already sitting with some of the other residents in the common room, watching TV. Liz and I then drove back to my mother’s house, where we drank wine and ate Christmas leftovers. The utter exhaustion took over then, and the bewilderment.
No matter how you plan, you just don’t factor in the muddle of emotions that follow doing this. A certain relief, some grief at what you can and can’t control, and sadness at having moved one step further toward what terrifies you.
So I’m having some trouble organizing myself right now. My house and yard are a mess, but I don’t know what to do first. The downstairs toilet overflowed this morning, leaving a small lagoon in my kitchen, and this paralyzed me. I went to Home Depot and threw anything that looked even remotely useful into my cart, worrying all the time about getting home in time. In time for what? Another habit to break. I then did some food shopping, trying to remember what I used to buy before I assumed my mother’s eating habits.
So I’m certainly not giving up the one-day-at-a-time mantra. This is the interim between the old way of caregiving and the new way. Out with the old and in with the new, as they say at this time of year.





December 31st, 2006 at 12:44 pm
Dear Deb,
Although it seems like everything is changing, you might be releived and bewildered to find nothing really changes. Your mom is still your mom, your protection and love for her will still be needed, your sister will still be your sister and the world will continue to spin.
The location of “where” your mom lives and “where” you live will be different. Your mom’s home and your own home sound wonderful but our homes are where our hearts are, not contained in its bricks or roofing materials.
Alzheimer’s requires strict attention, but it can’t make us who we’re not, unless we allow it. Forget Home Depot. Go to the store, buy yourself a bottle of your favorite wine, a bunch of gorgeous flowers, your favorite food to cook. Make yourself a grand dinner, use linen and fine china. And enjoy this moment of you taking care of you. I bet its been a while. As forced as it may feel and uncomfortable and silly, celebrate this woman - you! Because the world will continue to spin, everything will require your attention again, but for goodness sake, today, be there for you.
Our homes are our hearts. They can’t be “moved” or “stored” or “sold.” They are furnished with our memories, adorned with our love, heated with our passions. They are our sanctuary in times of strife, our fortress in times of upheaval, and our ultimate vacation spot when we need a place to unwind and relax.
Nothing, especially a bogus disease life Alzheimer’s, can claim the indomintable spirit of a daughter who loves her mother. Enjoy this day. This moment. This now. Make dinner.
Patty
January 1st, 2007 at 5:11 pm
Hey Deb,
I SO understand how you feel. And I just took a couple weeks of focused attention of taking care of my Mom, and I’m overwhelmed at going back to my other life.
I’m so sorry that this was such a difficult experience. No matter what the facility says, you can be over there as much as you like. Now for a change though, you get to think about ways to bring your mom joy instead of having to worry about the day to day caregiving - although there will still be ways that she’ll need you regularly.
But enjoy being at home. You have a great attitude about this transition. Happy New Year.
January 8th, 2007 at 2:28 pm
I found your site as I searched for other caregivers of Dementia patients. I am caregiver of my mother who has dementia. I brought her home from the nursing home, where she had been living for six months, so that I could care for her. I brought her home because I had been going through the same thing you are going through now - the hurt and the anger she felt at her children for putting her in a place where “she was all alone.” I’m sorry you have to go through this now, but I also envy you some having the strength to put your mother in a place where you know she will be well cared for by others. After discussions with my siblings and my husband, I no longer work outside the home but instead am full time caregiver for my mom. It’s hard - most days she doesn’t even know who I am, but I am thankful that I am able to do it. Good Luck with your mom and continue to be strong for her - as it sounds like you are now.
April 6th, 2007 at 10:58 am
My mom is in assisted living three miles from me. I see her every night, get her ready for bed and give her her slieeping pill and a snack. I am tired of this, she has aphasia now, still in relatively good physical health. When will it end?