2023-1-31 Time for a birthday!


Happy birthday to Linda!

(Tricia)

This past weekend we celebrated Linda's birthday--I can't believe that this is the second birthday we have celebrated with Linda since all of this began. She received some lovely cards from family and friends, and we brightened her room with flowers and balloons. When we asked Linda what she would like for her birthday lunch she answered quickly and specifically: "Calzones!" Normally, when we ask her what she would like to eat, she almost always says either "I don't know" or "Nothing," so the fact that she had a preference was a nice change of pace! We ordered calzones from one of our favorite restaurants, had her favorite dessert (cheesecake!), and then watched episodes of "Wednesday" on Netflix, which we really enjoyed. 

Linda's oxygen levels continue to improve, to the point that we no longer keep her on oxygen during the day. Since we have taken her off or reduced three of her medications that have sedating effects, she has been more alert during the day. Once again, Linda's condition seems to be stabilizing, so that we can at least take a breath. We know that her condition is always going to be fragile--anything can happen at any time--so we have to try to appreciate these quiet times when they come.

This week, I do not have daytime caregiving for three days--today, Wednesday, and Thursday. So, I'll be taking care of Linda myself on these days. This was unexpected, but the daytime caregiving isn't too bad while she is doing comparatively well. Although I can't focus on my work very well while making sure Linda has what she needs, I can work a little. Plus, it is an odd kind of break to be able to be in the house without a caregiver on hand. I had planned to start trying to take over the caregiving one day a week anyway, so this is a good trial run. And, of course, it's nice to save money where we can.

The hospice bath aide came today. As usual, Linda initially refused a bath, but we were eventually able to talk her into it. But as we got Linda into the wheelchair with the Hoyer lift, (so we could take her to the kitchen sink to have her hair washed), the Hoyer lift jammed in the "down" position. This was not good, because we had no easy way of getting her back into bed. After the bath aid finished washing and drying Linda's hair, we were very concerned that we wouldn't be able to get Linda back into bed without the lift, especially given that Linda's knee fracture has not yet completely healed. 

As we stood around Linda discussing our options, Linda pipes up, "If you just step back, I can get to bed myself!" There was no reasoning with her--she was adamant that she could. The bath aide was standing in front of the wheelchair to keep Linda from trying to stand, and Linda kept asking her to back up and give her some room. Finally, I decided to meet Linda half way--I ran to get her walker from the other room and put it in front of her to grab, but told her we would still need to lift her to keep her safe from falling. Luckily, she accepted this compromise without argument. At that point, the bath aide and I got on either side, hooked our arms under Linda's shoulders, and lifted her up. Goodness, the bath aide and I were shocked when Linda was actually able to help! She is still a two-person assist, but she was bearing part of her own weight. We were able to stand her up, turn her, and get her into bed far more easily than either of us had expected. 

Once she was back in bed, Linda was grinning from ear to ear, both because she had at least partially proven her point and she had been able to get into bed without the Hoyer lift! (She hates that contraption so much.) To me, however, it was bittersweet, because it was just another indication of what she could accomplish if she would just be willing to do some daily physical therapy. That remains one of the most frustrating parts of this whole ordeal. 

But while things are still difficult, there are some bright spots here and there. Earlier this week, for instance, Linda yet again showed us that she still has her sense of humor.  When Ed and the nighttime caregiver was putting her back in bed, Ed stood one side of the bed and the caregiver on the other.  As they were lowering her down in the Hoyer lift, she looked at Ed and began crying out as if she was in pain. As he was scrambling to figure out what was wrong, Linda turned to look at the caregiver with a big grin on her face--Ed immediately knew he had been had. Even now, she still enjoys a good practical joke! 

We have no doctors' appointments or other obligations coming up--just visits from hospice staff. So, I'm going to take advantage of the quiet days ahead to try to get caught up on work, housecleaning, and overall organization--all areas that have suffered over the last few months! Here's hoping I can get a good start on the month ahead.

(Also, I want to give a quick shout-out to Marilyn as well--her birthday was last week. Happy belated birthday, Marilyn!)

Comments

Post a Comment

Popular posts from this blog

12-25-2022 Merry Christmas to all!

Image
(Tricia) Since Linda came home from the hospital in November, it has been much quieter than it was before she went in.  No more physical therapy, very few nursing visits. Hospice started up again two weeks ago, but Linda has turned down most services (such as the bath aide and chaplain). She has been telling us that she wants to rest, so we are giving her that. She does get up in her wheelchair almost every day, which at least gives her a change of scenery. Last Tuesday, we did take Linda to a previously scheduled doctor's appointment with a neurologist specializing in cognitive issues such as brain injury and dementia, at a practice is called the St. Louis Center for Cognitive Health. I almost canceled the appointment, because I didn't think much would come of it. But this was an appointment I had rescheduled after canceling one in July the last time she was in hospice (and I had made that appointment in March-- the joys of American healthcare). When I canceled the July appoin...
Read more

3-24-2023 "Never Roger, always Ed!"

Linda's brain injury has brought with it a host of maddening symptoms, but one of the most prevalent is that it has made her not just unable to remember people's correct names, but at times seemingly unwilling to. This has been especially true for Ed's name.  For some reason, her brain is convinced that there are actually two males living in this house--one named Roger and one named Ed. When we ask her what each one looks like, she points to Ed and says, "They both look like him!"  And, of course, when we ask the obvious follow-up question, "Then why do you think they're two people?" she will respond with some version of "Their hair is different" or "They wear different clothes." We don't know where this comes from. We don't think she's connecting Ed to her neighbor in Mountain View or our cousin in Indianapolis (hello to both of you!).  But the mix-up has been there since she first started talking after coming out of ...
Read more

10-4-22 Quick update

(Tricia) I just wanted to post an update about how things have gone since Linda was discharged from hospice last week. We took Linda in to see Dr. Kevorkian on Saturday, and he decided he wanted to wait to remove the drain in her right side until she was at home and lying down. So, he's actually going to make a home visit this Thursday for the drain removal. He also has now established the start of insurance-covered PT -- they will be coming in to evaluate Linda on Friday. This is bittersweet, because we really like the private pay therapist who has been working with Linda to this point. She has helped Linda improve considerably, and she seemed genuinely sad today when I told her about the switch.  But I am having her come at least one more time (on Thursday). From there, we'll see how St. Luke's Home Health's PT services work for Linda.  Today was a PT day as well, and it went very well. Linda sat up on the side of the bed with some assistance for 10 minutes--a record!...
Read more