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A card I received from my mom when things were different - I've saved so many!
“I was discouraged”
The nursing facility told me my mom would not be allowed physical therapy. My father was broken down about how the caregivers he paid for would not be allowed to assist my mother at mealtime.
My frustration was obvious when I sent out an email update to my friends and family. I received this message back from my friend, Sam, who is a physician.
On Mar 8, 2011, Sam wrote:
Judy, OK, let’s just all take a step back….
With regard to physical therapy, your mom’s dementia could make this very difficult…we certainly do not want her to be in pain, and it might be hard for her to follow a program that would eventually enable her to walk…furthermore, she could be at even greater risk if she did walk… for falls, confusion as to where she is, etc.
As far as eating, I’m not aware of any evidence showing that her condition will be improved if she eats more…most patients with dementia eventually lose interest in food, whether or not someone helps feed them. What will change is how quickly you and your family are faced with the decision of whether or not to put in a G-tube for nutrition and hydration. As you have told me, if your mom is happy and comfortable, that is the key thing.
I don’t want to see you, your brothers, and particularly your Dad, be upset, depressed or angry over your mom’s condition…your mom is doing the best that she possibly can…and all of you are doing the best that you can. Even the facility is probably doing the best that a home facility can (though it may not seem like it).
Do the best that you can for your Mom, but primarily spend time with her and try to enjoy the awareness that she still does have. Keep her comfortable and happy…but please don’t tear yourselves up over this. Professional advocacy, or adversarial relations probably won’t change much for your mom in the long run, but will significantly increase your own stress and discomfort.
I know it’s a very difficult situation, and continue to wish you all the best!…Sam
Thanks so much for writing this! It is very, very helpful for me. I’m really glad I’m going hiking today. I think being outdoors and “taking a break” from all of this is what I need to feel more centered again. I was actually looking into advocacy and you’re right – it won’t make a difference and could make things worse.
The sad part for me is that my mom does look forward to meals and despite her weight loss; she enjoys eating (though, briefly). It’s like they’re taking away one of the few things she has!
The physical therapy represented another thing that she was hopeful about. She wanted so badly to do those exercises!
Thanks for putting this in perspective. I hope we’re not faced with the G-tube possibility; I don’t want to think about that because we don’t plan to ever go that route with her again.
I think it’s so wonderful how I’ve been able to share my journey with you, which includes hearing about my friends’ ailments and my reconnecting with Carol. Maybe your ears will be burning today!
Everyone enjoys your messages, too. Thank you and have a great day!
I must say, Sam has hit the nail on the head and has articulated, beautifully, the important things here. You are lucky to have his insight as a physician who is also a friend.
I sure look forward to today with you and Joni; it is stunning outside! See you very soon!
I feel much better about everything. I know our hike today will put things in perspective for me!
Tomorrow, I have a meeting. I’m going to see my mom earlier and enjoy the time with her. I don’t feel like I will allow the meeting to “get me down.”
It is “what it is” and my attitude is very important to everyone around me.
Ps. Watch out – I might be singing as we gather lettuce today!
On Mar 9, Carol wrote:
Let’s see, what songs could you sing? Lettuce Entertain You…Greensleeves…I’m Looking Over A Four-Leaf Clover…Where Have All The Flowers Gone…Oh What a Beautiful Morning…oh, yeah, I could go on and on until you puke!
On Mar 9, Susan wrote:
…..Parsley, Sage, Rosemary and Thyme. Mares eat oats and does eat oats and little lambs eat ivy, a kid will eat ivy, too, wouldn’t you? Coming through the Rye, The Wind That Shakes the Barley, The Autumn Leaves, I heard it through the Grapevine, You say Tomato, and I Say Tomahto…
I can’t keep up with such good puns – I conseed!
Actually, I have a voice lesson with Peaches on Friday. I’ll call my lesson – Peaches and HERB.
A coffee table book Carol received from her husband last week for her birthday. It was full of their photos of favorite foods. I love the book jacket with the Chanterelle mushrooms on the back!
A photo I took yesterday of a portion of Carol's exquisite gardens.
“She is the one who has kept me alive!”
My father was too depressed to attend the meeting this time.
It was a smaller group of people from her facility than the last time; there were six other people. Everyone was friendly and smiling.
The same familiar issues about my mom were discussed. It still seemed unimaginable to everyone there that my mother did not take pain medication for her “unrepaired,” fractured hip.
A physical therapist told me she had never worked with someone who had a fracture without a surgical repair – she was not comfortable when she saw my mother “grimace.” This was despite my mom verbally expressing that she did not have pain. My mother would not receive any physical therapy. An appointment was made for her to see the orthopedic doctor again.
My mom’s grimace didn’t seem a clear indication of pain to me; it seemed to me that this was more about the therapist’s discomfort of working with someone who did not have hip surgery. I decided patience was warranted, since my mother had an appointment next week with the orthopedic doctor. His decision would over-ride this.
It was very uplifting to hear my mother’s doctor speak. He looked me right in the eye and said, “I have to say your mother has defied the odds. She has done better than I expected. She may actually recover much of her prior function.”
I expressed myself articulately, without emotion. I had many questions. I asked whether my mom could be taken out of the facility as she had been allowed to in the past.
I was told she could leave the facility once she was “signed out.” I asked if her caregiver/companion, Miriam, would be allowed to take her out. That caused some confusion and a discussion followed about who would help put my mom into the car. Then it occurred to everyone that no one from the facility would be there at the other end to take her out of the car!
Finally, I was told it was allowed and I felt relieved. Certainly, it was important to see if my mom was even up for it.
However, it would be very exciting and uplifting for her to look forward to such an outing.
My father told me, “I don’t want her going anywhere – it’s too hard!”
Miriam told me, “I can’t wait to take her to the places she loved before. It’s no trouble for me at all!”
Miriam and I both decided – we wouldn’t worry my father, so instead we would tell him after any outing how it went.
Before I left the meeting, I spoke with a nurse practitioner about my mom’s dementia. She gave me a lot of advice about how to approach my mother’s “confusion.” My term “dance” of dementia fit her philosophy perfectly; dancing was a “lighter” approach versus “correcting.” So I was definitely doing something positive all along by dancing with my mom, in that regard!
Miriam and my mother were waiting for me. I had bought lunch for the three of us. The weather was beautiful and we sat at a shady table outside the dining room. I told Miriam, “You are allowed to feed my mom whenever a family member is there; when you are with me or my dad it’s no problem.”
Prior to that, Miriam told me she did not think it was allowed.
I noticed my visit had lifted not only my mother’s spirits, but Miriam’s as well. I had played my guitar for both her and my mother in the garden earlier in the morning. Miriam was humming along to my songs and it was obvious that she knew my songs by heart. How wonderful that was for me!
When I first arrived, Miriam’s eyes were downcast. Now her eyes were bright and she looked happy. She said, “When you are here I feel like I am not alone. I want to do so much for your mom! But there’s less and less that I can do!”
I reminded her to focus on what she could do rather than what she could not.
My mom ate her lunch with relish – I couldn’t help but throw in a pun; I had brought her a hot dog for lunch! She did not need anyone to help her eat the hot dog or the French fries. It was great to see her eating.
During most of my visit, my mom didn’t make much sense. But her happiness was very apparent and I held onto that instead.
It was time for me to leave; my mom began to fumble with her purse. I knew she was looking for money. I told her how appreciative I was, that I had used her credit card to pay for our lunch. Hearing that made her beam.
Suddenly she turned to Miriam and said, “Where did I ever find my daughter? How did I find such a daughter? She is the one who has kept me alive!”
Miriam’s eyes were shining as she listened. “Judy, please put that in your blog – promise me!”
I hugged my mom and reminded her that god has been looking after her and has kept her alive. Her will to live was remarkable and my goal was simply to keep her as comfortable as possible.
I left and immediately listened to music. I realized I had eaten far too much lunch, but decided to be gentle with myself.
Clicking on this makes it larger.
This sign really spoke to me. It was at the trailhead where I hiked, yesterday.
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