9-9-2022 Slow going, but some progress

(Tricia)

The physical therapist is now coming to work with Linda twice a week--after four sessions, Linda has gotten slightly better at sitting up on the side of the bed (propped up with pillows and holding onto the bed rail), but she still gets tired quickly. The PT tells us that Linda has to be able to hold herself up on the side of the bed for at least 10 minutes, without support, before she will clear her for a walker to use to start helping her stand again. During one session, Linda was in her wheelchair, so the PT ran Linda through some leg exercises:

Linda hates having her picture taken! But in this shot,
the light from the window obscures her face,
so I thought I could get away with sharing. :-)    

Unfortunately, Linda's muscles are incredibly weak from being unused for so long, and the antibiotics she's taking could be exacerbating that effect. That said, Linda is making some progress, albeit very slowly. The PT has instructed us to get her sitting up on the side of the bed on non-therapy days as well, so we have been trying to keep that up.

On Monday, she had an especially (and unusually!) energetic day. Unlike most mornings, when she sleeps in, she actually woke up at around 8 a.m. and wanted UP. So we got her up in the wheelchair. We checked with her every hour or two to see if she wanted to lie back down, and each time she said no. At one point, she wanted to sit on the couch for a while, so we used the Hoyer lift to get her onto the couch, where she sat for a couple hours, while we all watched television together. Then, it was back to the wheelchair for lunch, before she finally agreed to go back to bed at around 3:00 p.m. Mentally, she was pretty clear during this time as well, which was good to see.

When we told this to the physical therapist the next day, she expressed concern, noting that "seven hours is way too long for her to be sitting," especially when she is susceptible to pressure ulcers. So, we won't go quite that long again! But if she has a similar desire to be up that long in the future, we'll just plan a break in the middle of the day where she can lay down for a while to rest up before we get her up again.

She had an especially busy day yesterday, with the hospice nurse, bath aide, physical therapist, and even a massage therapist all coming to the house. (I never thought Linda would agree to a massage, but I decided to try it anyway. Turns out she loved it--he spent a whole hour with her!) She got through it all, but today, she was tired all day long. Even though the PT asked us to get her sitting up every day, Linda was not having it today. She just wanted to sleep--and of course, when she's tired, she becomes more confused than usual. I'm hoping that's all just a result of so much activity yesterday.

Yesterday, when the hospice nurse came for one of her two weekly visits, she once again began talking about whether Linda will qualify for hospice once her recertification date comes around in early October. Basically, to continue qualify, a patient has to show some level of decline. With Linda, currently, the only indication of decline in her physical health is a slight loss of muscle mass (which the nurse determines by measuring the circumference of Linda's arm with a measuring tape). But the nurse said that might be enough, if we wanted to continue taking advantage of hospice services. She was going to discuss it with the hospice doctor. 

Back in August, when her last recertification date was approaching, I had been thinking that taking Linda off hospice would be a good thing, if she was getting better. This time around, I'm viewing it differently--if Pathways can find a reason to recertify her for hospice, then I think we should continue using the services.  Yes, we have to pay for physical therapy, but it's possible that insurance would not cover PT even if Linda were off hospice. So, this way, we continue to have many of Linda's medications, her supplies, and medical equipment covered by insurance, through the hospice agency, while also having access to nursing care, the social worker, a chaplain, etc.

These past two weekends, a woman with Pathways also brought her certified therapy dog, Piper, to visit with Linda for about an hour each time. Linda loves dogs, so she enjoyed that. (Although she did express a wish that Piper, a 10-year-old little gray terrier, had a bit more energy! The dog was pretty chill, just sitting there and looking around while Linda pet her.  I need to find someone with a friendly golden lab, Linda's favorite!)

As I told the hospice nurse, I'm willing to play this situation both ways--that is, to continue Linda's hospice care while also taking steps to help her improve, to whatever extent improvement is possible. Given how poorly the insurance company treated her over the past year, when she needed care it would not cover, I'm willing to take as much money from the insurance company for her care now as they'll give her, hospice or not.

I'm just glad I found a hospice agency that understands that Linda is not a typical hospice patient. They all are doing what they can to work with us in what is an unusual situation, which I very much appreciate.

In the meantime, I'm doing my best to maintain my calm!  This continues to be a stressful situation, and sometimes, I'm not sure how to manage it all. But I'm trying. Last Friday, Ed and I went to the Cardinals-Cubs game with friends. It was a good game to attend even if there was a little rain! Here we are, all smiles after the Cardinals' 8-0 win:
 

Go Cards!

And this past week I had a birthday, so Ed and I were able to go out to dinner for that.  I truly want to try to get out a bit more, but it's difficult to get into a relaxed frame of mind--to truly take a mental break--with so much going on here at home. One thing is for certain, caregiving is an incredible challenge. Here's a shout-out for the 50+ million people out there caring for an adult coping with illness. I keep thinking there has to be a better way--I just haven't come up with it yet!