Hospice Recertification

Every three months, for the first 6 months, we have to go through an evaluation process to determine if Mom is still eligible to remain on Hospice. As odd as it may sound, we were worried that Mom’s condition had not deteriorated enough for her to remain on Hospice. Both sadly and gratefully, I would like to tell you that she has. While I’m sorry that she is sliding, I know that it is inevitable and that we are certainly having to deal with the increasing issues related to that slide. By the same token, Hospice has been such a blessing to us, in regards to Mom’s care, that to have to forego the support and expertise that Hospice brings to the table would make this time much more difficult.

The points on which they judged her decline were twofold; had she lost muscle and body mass and had she lost substantial mental and physical function. She has lost both to a substantial degree. Her leg measurements had decreased enough to substantiate what we already knew, that she has weakened such that she can no longer support her own weight to stand, much less walk. Her arms have weakened enough that we often have to feed her and hold her drink for her. She enjoys the princess treatment, but sometimes she gets frustrated with us when we move too quickly with the next bite… or too slowly!  Most of the functional decline has been laid out in previous posts, so you already know what contributed to that status.

 

That said, we will have to go through the same evaluation process in three more months, then every two months thereafter. If her condition has continued to deteriorate by the end of three more months, then she will have an in home Doctor visit to be sure that all proper care is being afforded her at that point.  

There are other complicating factors in this process, but most are related to the politics of Medicare and the uncertainty that care providers are feeling as a result of the changes and the uncertainties coming from the new healthcare programs. That’s a topic for another time, though… and probably for another venue, too.

So Where Are We Now...

Mom has grown weaker and seems to be sleeping a lot more these days. She is having a series of issues that have caused me concern, but the Hospice Nurse has advised me that all are expected symptoms of the disease. Her circulation is decreasing, so her hands tend to turn blue if they lay in her lap for too long. Her right hand is curling more and more, but I suspect that is partly due to the fact that it hurts her and she doesn’t use it as much. She is having more difficulty swallowing, even with liquids. The nurse has indicated that we might have to start pureeing her food to make it easier for her to swallow as time goes on. Of course her language skills are deteriorating and sometimes she will engage me with a sentence or two of completely garbled sounds that are not even words. Then she looks at me, waiting for me to respond; clearly thinking that she has spoken the words that she was hearing in her mind.

We have taken her off her pain medication for right now in an effort to see if that was what was causing her to be so sleepy. It has not seemed to make a big difference, but we are looking at other methods of addressing the pain that don’t involve ingesting medications. A cousin suggested a heating pad or heated rub, like Tiger Balm or Bengay. We had tried the heating pad in the past, but that tended to irritate her more than it helped her. She is not very tolerant of heat. I worry about the heating rubs for much the same reason. At some point we will have to decide if she is in more pain than she needs to be and if so, we’ll go back to the medication to keep her comfortable.

As her food and liquid consumption has continued to decline, we have taken her off of her insulin. The danger of her sugar dropping too low in the night far outweighs the occasionally high blood sugar numbers that we get some days. At this point, she is not going to suffer from the impact of high blood sugar, but may well suffer from a diabetic coma if her sugar drops too low.

She really isn’t leaving her room now, and, in fact, isn’t leaving her bed other than to be carried to the bedside toilet and back. Today we actually bathed her and changed her diaper in the bed because she was so tired from the morning toilet routine and the nurse’s visit. She didn’t want to eat dinner tonight, but did get half a sandwich down and her cookie! Most days we are lucky to get 12 to 16 ounces of fluids in her, but today we got an ounce or two more. Her bowel movements are being impacted by her lack of movement and the reduced intake of liquids, but we are compensating with a stool softener and a very gentle laxative. We don’t get daily movements, but they are becoming less painful when she does have one, so we are happy with that.

I keep telling my caregiver’s that, when they ask her a question and she answers yes or no, that she really has no understanding of what the word she’s spoken means most of the time. They didn’t believe me until they started to act on the answer she had given them and end up in a tussle, with her responding negatively to what they thought she wanted them to do. Now-a-days, I ask her a yes or no question, no multiple choices, as she can’t even process that any more, and then I gently try to act on what I think she has indicated. I judge what she really wants by the way she responds to my actions rather than to my questions. It makes life more interesting, but she still engages with me that way.

It’s interesting what processes and what is missed in her mind. She can’t process most jokes, but she still processes physical humor quite well. For example, I will make a smart comment and then roll my eyes. She doesn’t react to the comment, but giggles openly at the eye roll. Hence, TV shows with lots of physical humor seem to appeal to her more than shows without it. The old TV show “Monk” is one that really triggers reactions from her, because of the physical humor and because the lead character makes so many tormented and silly faces.

She is still very affectionate with those around her; kissing hands of visitors and playfully threatening, while giggling, the nurses and caregivers who are assisting her with her daily needs. It is not unheard of to be patted on the head when you are bent over trying to put on her socks. She is a loving person, by nature, and that nature is still on full display.

A Few Days Difference

What a difference a few days makes. On Sunday Mom was unable to make it from the bathroom to the rolling walker/chair before her legs gave out. She had taken two rests during the clean up and get ready for bed process, but still was too weak to get all the way through the door without collapsing. I was able to hold her up long enough to get her back against the door frame and then we slowly slid to the floor together. It was such a slow, gentle descent that it felt like slow motion. She was unhurt, but it became clear that she is becoming weaker quickly right now.

When I checked in with Hospice, as they instructed me to do whenever something of this sort happens, the nurse suggested that it is time to stop trying to toilet her in the bathroom. Thus, we have set up the bedside toilet for her to use. Additionally, I am having the caregivers help me get her toileted and prepped for bed before they leave. We are getting her safely tucked into her hospital style bed and then raising the head of the bed up so that she is sitting up. I feed her dinner in her bed, like the princess she is, and then I brush her teeth, lower the bed and she is safely and comfortably tucked into bed for the night.

If I need to clean her up during the night I can do it in the bed or in the toilet right beside her bed. Most often, however, I will simply wait until the caregiver arrives in the morning and then we can do it together. Mom is too weak to help me anymore and, yet, she is too heavy for me to lift or move by myself. So this compromise seems to be the best plan at this time.

I will add that mom’s sense of humor is still quite intact. She doesn’t hesitate to offer a fist and a giggle to anyone who is trying to cajole her into doing something she isn’t prepared to do. She will offer a finger for her blood sugar prick, then quickly pull it back under the covers and laugh! She has been known to pat the bath nurse or any of us who care for her on the head when we are bent down to do something like put on her socks or shoes. She may not be able to crack a full joke, but she did understand today that the nurse, the caregiver and I were talking about her. She told us that she could hear us in her own way and, when I told her we were plotting against her, she offered a quavering “… whaaaaaaat?” It wasn’t quite a full “Say Whaaaat”, but it was close enough to be clear what she was saying. And the giggle that followed removed any doubts. So, we lose ground in one area, but we are holding it another. And I’ll take the joyful spirit over the weakened body any day!

Not As Bad As It Sounded

Apparently Substantial Decline is a phrase established by Medicare and to which an Alzheimer’s patient must be shown to conform if they are to stay on Hospice. Since Alzheimer’s patients often plateau after a decline and can then linger on that plateau for a while, Medicare requires that Hospice show a substantial decline in order for the patient to stay on Hospice care. Thus, when the nurse told me that mom is in a substantial decline, she didn’t mean it by my standards, or yours, but by those outlined by Medicare. In other words there is a measurable loss in arm and leg size reflecting a decrease in muscle strength, there is a lessening of her desire and /or ability to eat food, there is a decrease in her daily fluid intake and her morning blood sugar readings are higher than they had been due to much of the above and there is an increase in her sleep patterns; these and a few other such items qualify her condition as declining by Medicare standards. So… I’m breathing a bit easier and feeling less despairing than I was before I talked with the nurse on Tuesday.

If she should plateau and no longer be seen to be declining, then Hospice will try and qualify her for the program under another of her ailments so that she can continue to get the in home care that she has been receiving and which is so helpful to us all. It sounds to me like there are several categories under which she is eligible, but Alzheimer’s is the most prominent. Thus, it is the one under which they qualified her for the Hospice program.

On another topic, I feel like I have a two year old under my care. It seems the one word that she still knows consistently is “no”.  I ask her if she is ready for bed and she tells me, “No”. So I ask her, do you want to stay up a while and she tells me, “No”. I am actually trying to default to seeing how she reacts when I start doing something such as removing her blanket or getting her more tea or food. If she reacts positively then I know which “No” she meant and proceed. If she reacts negatively, then I know which “No” she meant and stop what I’m doing! It makes things interesting sometimes, but she can still let me know what she wants to do and I can still obey, as a dutiful daughter should!

She is talking in her sleep more often now. She is obviously talking to people she loves in her dreams. I’ve heard her call my siblings names more than once. One time, when she had been dreaming and wakened to see me sitting across the room, but not too clearly, she called me by her sister’s name. So family, if you think you have been forgotten, know that you have not been. She still remembers each of you quite well; she just can’t place you as easily in her waking world as she can in her dream world. I really think that her brain functions still on a subconscious level, even though in her waking, conscious world she can’t bring things to the surface as well.  Of course, I also got my psychology degree from a Cracker Jacks box…

 
Again, let me finish with, “she is happy, she is comfortable and she is well loved.” So all is as it should be.

Declining Phase

It is official now, the Hospice Nurse told me today that she considers mom to be in a substantially declining phase.  Lest you become despondent, as I am at the moment, then remember this; with Alzheimer’s, declines can be followed by improvements. It’s the quirky nature of the disease. Even if that should not prove to be the case, there isn’t anything that can be done to change the situation so do what I just did… Tell yourself to put on your big person panties, hitch ‘em up snuggly and get on with enjoying the time we have together!! (Again, with Alzheimer’s, that can be a long time yet! So smile!!)

Energy Level

Mom’s strength is dissipating quickly now. Twice this week she has been so exhausted at the end of the day that she can’t stand for the needed cleaning that follows her pre-bedtime toilet run. I have to almost hold her up and, by the time I get her into her chair, she is so stressed out that she ends up vomiting. I don’t know how to do the needed clean up any faster, so I may have to try and do it in phases. I’m not sure if that will work, because she gets more exhausted in every step of the process. Will extending the process let her rest along the way or just drag out the period of stress? I don’t know. My caregivers don’t have any advice for me on this other than keep all the supplies I need close at hand and move as quickly as I can... which I had already figured out for myself. Maybe I should move her bedtime up a bit earlier, but she sleeps so much already….    There may not be a simple solution to this one, but I’ll entertain any ideas you may have.


Update! I tried Plan B tonight. We took the clean up process in three phases with a sit down and rest in between each one. It took a lot longer and she was exhausted by the end of it, but not to the point of vomiting. We're calling it a win!

New Phase

I think we are entering a new phase.  We have ruled out the medication as the cause of her sleepiness and it has not passed with time, so I think we are moving into a “sleep more and function less” phase right now.  Twice this week we have actually had to change mom’s diaper in bed because she refused to get up. Please note that I am not complaining, but there is a point in this process where you become overwhelmed with the decline in your parent and you just want to sit down somewhere and cry. I suspect that this is normal. Once, in the last few days when he was at home with us, my dad said to me, “You know the world has gone to hell when your daughter has to wipe you’re a….” You know.  I hear those words echo in my mind when I’m trying to change my mother’s diaper while she’s lying in her bed. I know she did it for me and I’m happy to return the kindness, but it sure makes me feel like the world has gone to hell. Or at least it is well on its way to doing so.

We are usually able to get her up by 1:00, but yesterday we actually had to feed her breakfast in bed at 2:00 because she would not move. She clutches her blankets and says “NO”. She smiles while she’s doing it, but she is quite firm in her unwillingness to let go of the blankets or to move out of the bed. She still has quite a strong grip, in case you are wondering!

Her night time sugar is completely regulated without insulin now. She is getting her morning insulin sometime between 2 and 3:30, due to her princess/teenager sleeping schedule. Lately she has followed the strenuous efforts of breakfast with a nice nap; at the very least a dozing in and out while listening to whatever is on the TV in the back ground. We do make her go into the family room each day to eat as the light is brighter in there and we think that the light might help with wakefulness. We are all entitled to our dreams… Hers come while she’s napping and mine, of light induced wakefulness, snooze right alongside her.  Oh Well.

She still eats a large breakfast, but dinner is becoming smaller and smaller by the week. That after dinner treat, however, will not be forgone! I try to keep cake or cookies or something sweet to carry her through the night, and she loves it. She may only be hungry enough to eat half her meal, but she finds room for cake in spite of that. She takes it for the team!

When I come to bed at night I always give her a kiss or a hand squeeze and tell her “I love you, Mom. Sweet dreams.” Sometimes she doesn’t really respond, sometimes she just says thank you, but last night there was a long pause and then she said, “Too”. I had very sweet dreams last night, as a result!