Mom Update: May 2013

Mom listening to a Music Therapist sing some of her favorite songs. This was a beautiful and very emotional moment.

Many of you know my mom has advanced dementia, had a major seizure in April, and has been receiving hospice care ever since.   Hospice has been trying to reduce her restlessness and bring more sleep and calm into mom’s life.  It’s been a trying time during this hit or miss process of adjusting meds, and if you saw Dear Assisted Living Home, you’ll know it’s also been a frustrating time.  That’s why three weeks ago, I decided to move my mom in with me where I could take care of her one on one along with Hospice services here.

And then I changed my mind.  It was a decision based purely on emotion.   A reaction to distress — my mom’s and my own.

When our daughter was five years old, she had something stuck in her throat that allowed her to breathe and talk but caused her to panic and pace the house in obvious distress.  We tried everything to get it out including calling the doctor who said if she can breathe and talk, she’s probably fine.  Her panicked pacing went on for about an hour, when she jumped up on our bed all flushed and bothered, stood there with arms outstretched and fists clenched, and yelled in desperation, “SOMEBODY DO SOMETHING!!!”  I brought her to the ER, and four hours later, with my daughter asleep in my arms, the doctor said she probably got a toothbrush bristle stuck in her throat which seemed to have worked it’s way out.

“Somebody do something!” is said to this day in our home and it always makes us smile.  But my point is, this is how I felt about my mom.  She’s progressing quickly, she’s agitated, her caregivers are agitated and I jumped on the bed and yelled “SOMEBODY DO SOMETHING!!!”  Mom needs her family, her daughter, we need to bring her home with us!  We need to do something!

Since I left Minneapolis a month ago, mom has become completely incontinent of bowel and bladder.  She is no longer able to feed herself, and is having more difficulty swallowing.  Walking is the only activity mom can do on her own, but she’s losing this too and a wheelchair is in her near future.

The window to move mom came and went, and I missed it.  Her dementia moved so slow the first eight years or so that I wasn’t prepared for her recent rapid decline.  Mom needs total care now and to remain in familiar surroundings — she won’t be going anywhere.  But we’ll be going to see her.  My two children and I are traveling to MN soon because Jake will be working there this summer and we wanted to make a road trip out of it.

I adore this picture of mom and my nephew, mom's grandson -- Javier. Javie visited from Texas in April and mom was smitten with him from the start, apparently thinking he was a love interest.

6 thoughts on “Mom Update: May 2013”

  1. Thanks for the update and sharing your frustrations. You are on my mind daily and remain in my prayers. Be strong, my friend. You are an amazing woman, daughter, mother and friend! Love you.

    1. Funny — thanks. I’m alright really, just sharing my thoughts. I believe everything will be okay, just trying to go with the flow. xox

  2. Mom has been in a heath care facility in the dementia floor since last August. She still thinks she is going home and packs up her belongings. We recently sold her house but she doesn’t know that and it really bothers me and makes me so sad. She is one of the “better” ones on her floor and I keep thinking she shouldn’t be there at this time. I take her overnight to my house sometimes. I keep thinking she doesn’t have a lot of “time left” to enjoy the simple things in the moment like playing with the dog (which she thinks is her dog) and eating the foods she likes and just sitting out side in the fresh air. So many little things that seem like no big deal, but to her are. When she leaves for a visit out she says she is never going back there and she is going to go run away and live in the woods. she always tells us she hates it there. I know how hard it would be to take care of her 24/7 but I still have this constant nagging I should take her to my house and get her out of there until her disease progresses. I feel I am being cruel by keeping her there. When she remarks how she wants to go home it just breaks my heart.
    Thank you for sharing your story. I am so sorry your mom is ill and my thoughts are with you and your mom. In our family we never told one another we loved them but now when I say good bye to mom I always tell her I love her and she says she loves me….

    1. Dear Karen, I am so sorry for what you’re going through with your mom. It’s difficult to know what to do in your situation because emotions play such a big role and it’s hard to know what’s best for your mom. As you’ve read, it’s been a difficult course for me to navigate as well, and I’m never confident of the direction we’ve chosen. But where we’re at now, at the end stages of this disease, it seems the decisions are being made for me and my family. It’s too late to move her and do many things with her, so even though it’s difficult to see her slip away so dramatically, there is a sense of surrender on my part — which if you’ve read any of my other musings, you’ll see tends to be a theme of mine. In other words, “letting go” is easier now that the mother I knew is mostly gone. I guess what I’m saying is, it has gotten easier for me — I hope Karen, that it gets easier for you. I hope you’re able to enjoy your mother while you can and while she still can. What can she still do? Do that! : ) Joanne

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