18 September 2020

Hi kids, Dad and I just received this email from Beth, updating us on how Grandma is doing. Love you all! Mom

Hi Everyone,

 

We are going to cancel the Friday Zoom meetings due to changes with schedules, but we are moving the meeting to Sunday afternoons at 4 p.m.

 

I’m going to schedule a visit for that time and I’ll help Mom on her side with the call.

 

Let’s use my Zoom room at #208-496-1706. If you sign in before I start the meeting, then you’ll be in a waiting room for a few minutes so don’t be surprised by that. You may also be automatically muted when you come in so don’t be surprised if that happens.

 

Just an update on other things.

 

I met with Mom, Dr. Santos, and Megan Hooper (Homestead Administrator) yesterday, and Dr. Santos qualified Mom for hospice. Her primary care physician will now switch to Dr. Packer and The Homestead Hospice team, which is housed in the 2^nd floor of Building 3 (just up the stairs to the left of the kitchen).

 

She is increasingly weak and wobbly and has fallen multiple times in the last 10 days, including at least one fall on each of the last seven days, with some days having two or three falls. So far, she goes down slowly each time so she hasn’t been injured or too bruised yet. She has developed edema in her ankles and feet. She is also often experiencing some pretty high anxiety, agitation, and physical restlessness, especially in her legs, and has developed a little tremor. This is contributing to her falls as she feels an urgent need to move but lacks the strength to do so. She has been in a loaner wheelchair for the last week as her ability to walk has been greatly reduced and she has needed extra support. She can still transport with support and guidance.

 

Her ability to swallow is diminishing, resulting in some choking when eating or drinking and in drooling at other times. We got a crush order for her medication about a month ago and that was helpful.  A speech therapist has evaluated her and worked with her but the swallowing issue is not reversible and will continue to worsen as her dementia advances. At moments she is extremely confused, delusional, and agitated. At other moments she is quite clear and sweet. That seems to be typical and I’m always so grateful for the good moments.

 

With her change to hospice, her medical plan will switch entirely over to comfort measures rather than treatment measures. We need to be prepared that this means we would not transport her to the hospital and that her care will be provided at the Homestead by the hospice nurses, in addition to the regular staff. This change will also eliminate some medications and might keep others if their focus is on her comfort. For example, the doctor added an additional medication for her agitation and another for her restless legs (which has been severe enough to significantly disturb her rest and is also contributing to the falls). These medications will have a sedating effect and she will likely sleep more. The important thing about that is she will have additional nursing care and she will hopefully have better rest and be more at peace. She has been getting so uncomfortable and unhappy at times and that could still continue but I’m hopeful it will improve with these changes.

 

Another important thing is that even if we get locked down due to COVID again, we would still have the ability to arrange visits through the facility coordinator. They recognize family access during end of life stages is important, with a number of precautions taken, of course. This gives me some peace that we would not be separated from her as fully as we were during the previous lockdown, if things close up again at nursing homes/assisted living for regular visiting.

 

For a few minutes yesterday as I pushed Mom through the garden, she perked up and was more clear. I asked her if she understood the changes that we had talked about with the doctor. She nodded and said that it will move things along. I feel like she was approving and peaceful about it. It was a pretty hard day but I feel like these changes match the reality of her physical needs and are true to the wishes she has shared in the past. 

 

I’ll hope to see you or your kids on the family Zoom Sunday. Everyone is welcome!

 

Much love to each of you!

 

Beth