Change is in the Air

 

God used last year’s hospitalization to help me see Mom needed to live with us.

Just over one year ago I wrote, “Honoring Your Parents: Nursing Home or Your Home?” (I invite you to read it here.) In that piece I endeavored to describe the process which had guided my decision-making related to caring for my mother as she slipped further and further into the horrible world of memory loss. Countless decisions have been made since moving my mother from Milwaukee to our home in Fitchburg. Each decision to be made along the way was generally preceded by some sort of adversity which required a change. We prayed about each change, each process, and each decision. Our faithful God always answered, shedding light on each uncertain step.

Change is in the air once again.

Mom’s advancing Alzheimer’s and a few recent difficulties have made it abundantly clear that we need to prepare for what the next level in mom’s care might be. There have been many “nudges” toward planning for the possibility of mom’s future care taking place outside of our home setting. But three things in particular:

  • A gentle nudge in the form of a well-timed question from Diane, mom’s palliative care nurse practitioner. “So, have you considered what the next step in your mom’s care might look like?” We had a good chat about that, and she gave me several helpful suggestions.
  • My hubby’s trip to India. I had to ask myself what I would do if something happened to him and he could no longer help me. Even though my family and friends rallied to help me out during his trip, it became very clear that caring for mom on my own would be at too great a risk to my own health and welfare.
  • My own frailty. I took a fall down a short flight of stairs in my own home. Aside from a scrape to my leg, a few sore muscles and toes, the greatest injury I sustained was to my own pride. The fall served as a wake-up call causing me to consider how Wayne would care for mom if something happened to me.

In the past year, I’ve looked at the websites of many assisted living places, have talked with a few representatives on the phone, traded emails with yet a few more, and even toured three that I liked and thought might be able to at least provide some respite care. In each case, I could not imagine my mother living there. After my little chat with Diane, I looked into a newer one she suggested and rated very highly.  BeeHive is a 16-unit specialized memory care facility designed to look and feel very home-like. It is ideally located in Oregon just a few miles down the road from us, and about a mile from the nursing home where my brother resides.

Wayne and I scheduled a visit in early September before his trip to India. I was favorably impressed as I watched staff interact with residents. Compassion and respect were palpably present. We met Gina and Andy, two of the owners, and felt their pride of ownership and desire to serve their residents.

Standing on the sidelines, I watched one sweet lady receiving a hand massage. As the aide gently applied lotion and stroked her delicate hands, she looked into this resident’s eyes and spoke with her like she was a familiar friend. I knew in my heart this was the right place. A puzzle was in the works at a nearby table and I could hear one resident talking to another in friendly banter. Yes, I could definitely picture my dear Momma sitting at one of the tables, working on a puzzle and telling (or re-telling) one of her many tales.

After some discussion and prayer, we decided we would put down a deposit to reserve a place for mom. She is currently number four on their wait list. While it is still my heart’s desire to keep my mom at home with me until God calls her to her heavenly Home, I have great peace knowing I have another level of care reserved for her. My greatest comfort comes in knowing the One who is guarding our steps as He walks before us paving the way for whatever our future holds.

I know in my heart that my dear mother would skip along to heaven tonight if she could. Nearly every day she tells me so. Momma’s greatest comfort comes in knowing that Jesus promised He has a placed reserved for her in heaven.

Palliative Care Praises

As this mid-stage of Alzheimer’s drags on, Mom is sleeping quite a bit more, not only at night (which I appreciate), but during the day as well – sometimes skipping a meal in lieu of sleep. Unfortunately, her nighttime sleep doesn’t appear to be very restful, as she gets in and out of bed various times throughout the night – sometimes to use the restroom, other times to explore the contents of her purse or her dresser drawer, or watch the real or imaginary happenings going on inside our house or outside of her window.

We have also noticed she has been less content during her awake hours and is more easily agitated. She paces back and forth between her bed and her chair at the kitchen table, never quite settled in either place,; never quite sure if she’s going to bed or getting up.

Long ago, when my mother was still able to make her own decisions, we had discussed her wishes related to end of life care. We had agreed that there would be “comfort measures only” as her time here on earth draws to a close – and she entrusted me with the future task of making those decisions.

The future is now, it seems. I’ve wrestled with what to do for her a lot lately and have come to the conclusion that helping her relax, get some rest, and ease her anxiousness does fall within the parameters of “comfort measures only.”

Momma is not yet in a state of decline which requires hospice intervention and end of life care, but she does qualify for palliative care in this transitional time of declining health and memory.

At the end of August, a nurse practitioner came to our home to establish a course of home-based palliative care. I liked Diane right from the start. What’s not to like? Diane enjoys gardening (and daylilies in particular) about as much as I do – even hooking me up with five new daylilies for my garden (pictures to come next summer)!

Mom’s blood pressure was very high, and had been trending that way for some time. This hypertension is likely one of the reasons she has been having increased difficulties with headaches. Diane suggested that a trial of  blood pressure medication might also help her with a number of other uncomfortable problems. She suggested a medication known to have a sedative effect on some patients, which may ease Mom’s anxiety and help her get more restful sleep. For the sake of Momma’s (and my) sleep and for comfort related to hypertensive headaches, I decided to try the medication. I’m not entirely convinced it is helping with sleep, but I am thankful her blood pressure is now normal and headaches are no longer an almost daily complaint.

Diane has been helpful in so many other ways, including being a liaison between me and mom’s primary care physician, following through on medication changes and checking for understanding regarding those changes. She has helped me work through decisions related to whether or not additional dental work should be done (weighing the trauma it may cause versus the benefit it would bring), connected me with caregiver resources and information to feed my inquiring mind.

As a caregiver, I see palliative care as being the comfort care “bridge” between Momma’s failing physical and mental health and the hospice care that will be provided for end of life needs. I am ever so grateful for Diane as she helps me walk my sweet mother Home on this leg of life’s journey with Alzheimer’s.