Surviving The Holidays

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Surviving The Holidays

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Mom has been living in the assisted living place for six weeks now. (Background: she had a stroke 2 months ago, and before that lived with me as her dementia was progressing.) She is still crying a lot, and many days when she sees me she bursts into tears and tells me she just needs to get back home. Usually we manage to get past that moment and enjoy a pleasant visit. Sometimes not. Staff members tell me she's participating in activities, making social connections, and smiling. But some of the other residents tell me how sad she is, and how confused. One lady who sits at her table in the dining room commented that her confusion seems to be getting worse lately. She often can't remember that anyone has been to see her, so she feels completely cut off from her family. And she doesn't remember participating in activities or therapy or even interacting with staff members, so she tells me she just sits in her chair all day doing nothing. She no longer watches TV. She swears she hasn't had a shower or brushed her teeth since she's been there.

At the suggestion of her speech therapist, we made a Visitors Log. Whenever someone visits, they write a brief message and if they can, send me a picture. I take photos every time I'm there and print them from the phone to Walgreen's, then tape them in the book next time I come. Almost every time I visit, we look through the book. She doesn't remember any of the visits, but the pictures seem to please her.

Whenever I arrive, she is sitting in her chair doing nothing. When I leave, I offer to find something on TV, but the TV just bothers her and she wants me to turn it off again right away. For Christmas I got her a Simple Music Player from the Alzheimer's Store. It's not perfect, but it's pretty awesome. It comes pre-loaded with big band-era music and you can also add your own, so I bought a 30+ song collection of Bobby Darin songs online and added those too. All she has to do to play music is lift a bar, then put it back down to stop. The only problem is that the volume has to be set by the caregiver by inserting a pencil or something in a hole on the bottom - only my son has figured out how to do it! So she can't change the volume herself. The original songs and the ones I added are at different volumes, so to get the new ones not too loud, the other ones have to be not quite loud enough. :-( But she liked it, she demonstrated she could use it, and hopefully she'll use it when I'm not there.

I hadn't planned to take her with us to visit my in-laws on Christmas Eve two hours away because it seemed like it would be too hard for both of us. But then I changed my mind because I thought it might help her reconnect with her life and make her happy to be with the extended family (my in-laws have always treated her like one of their own ever since my dad died). It was the right choice, but it was very hard and also eye opening. Mom had urinary incontinence before the stroke, but she was able to manage that herself with Poise pads. (My only job was dealing with the trash, since she would throw them away unwrapped, and they would usually end up on the floor.) Now she has bowel incontinence and is not able to manage by herself. So I experienced cleaning my mom's bottom for the first time on Christmas Eve. I packed gloves and wipes and extra Depends, and I took her to the bathroom every 1 to 1.5 hours to avoid any accidents. We got through the day, but then something happened on the way home. It became fairly obvious, but she wasn't aware of it. She was so exhausted and in so much pain (her back hurts a lot if she sits in any chair other than her recliner for more than a few minutes) by the time we got home that when she refused to go to the bathroom, I just let her get in her chair, knowing a caregiver would soon be coming to get her ready for bed.

The day with Mom was eye-opening because I got a clearer picture of the extent of her needs. With every step, every task, she needed guidance and support. I feel less guilty about the decision to put her there, and profoundly grateful for the help we're able to get. I still see her 5 or 6 days a week, anywhere from 45 minutes to 2 hours at a time. Sometimes more. I remind her she gets more quality time from me now because when I'm with her, I'm not just on the computer, ignoring her!

Somewhere around three weeks, I found I was grieving less, and I started to think about how I would use my extra time. I reached out to two people I know through church who are caregivers of loved ones with dementia. One is a husband caring for his wife, who is still in the early stages of Alzheimer's. I asked if I could take her out to lunch, and we've had two dates so far. And so far, it's been a rewarding experience. Our next plan is to go have lunch with my mom. The other person is a mom with a husband and teenage son, like me, who cares for her mother full time. Her mother needed a bedside commode, so I delivered one last week and visited for a bit.

Anyway, that's what life is like these days. My best wishes to all the caregivers everywhere!

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Lark

What a lovely, lovely post! Thank you for sharing so honestly and describing the progression and your feelings and concerns along the way. I love how you were able to have the opportunity to know that your mom is in the best place for her and for you. I love that you visit often and I love that you volunteer to help other caregivers. What a message of hope and love you have given us in this posting! Thank you!

CathyJ

Thank you so much for sharing this beautiful story of your Mom and your journey with her. I know I struggle with thinking about the possibility of my mom needing more help at some point than I can provide to make sure she is safe, well-cared for and has her needs met. This journey is not easy and the progression of diseases makes it challenging. Your love-filled journey reminded me that sometimes, we need to be able to let go of our current roles to embrace new ones that best support our caree and that it is okay.

jan

Thanks, LilMagill, for this update. I hope as time goes by, you'll continue to have confidence in your mom's present caregiving situation, and peace within yourself for having placed her in it. All the choices we make in this are gut-wrenching. With your mom as your focus now, as in the past, you can see what is best for her, and ultimately it will be the best for you. Best wishes for 2018.