WOOHOO!!

Mom's regular Hospice nurse finally got back to us today. She had been off with illness and heavy training schedule for almost a month. I had a chance to chat with her about what the other nurse had said and her response was very emphatic. She said she had no idea what would have prompted the other nurse to conclude that the time line was that short. Our Nurse said that we would see many more changes in Mom's condition and behavior before she was ready to leave us.

She said that she would expect to see her feet go blue, like her hands do now, from lack of circulation. She said that Mom would eat even less and drink less than she is at this time. She even indicated that Mom's continued sense of humor and ability to laugh and smile indicate that we probably have a few more months rather than a few more weeks. She did admonish me to remember that anything can happen, but barring an unforeseen change, she thinks we have more time with Mom than we had been led to believe previously.

How's THAT for some good news for a change?!!

Sleep Eat Smile

I had a heart to heart with myself this morning and I came to understand that the reason I have been so hesitant to post on the blog is twofold.  First, I find it difficult to write dispassionately about my Mother’s declining health and, secondly, I hate that so many posts would have to be” today we slept and ate a little bit then went back to sleep.” The cut and dried reality doesn’t offer anyone a glimpse of the bright, loving smile that she always offers when I wake her to take her morning medicine. It can’t show the giggling excitement when a classic old musical is on and a favorite song starts up. And it most certainly can’t capture the delight in her face when someone comes to visit and offers a hand to hold and then be kissed and patted in the cordial happiness of a born hostess.

 

Yes, she can barely speak two words together in a coherent manner.  Yes, it’s true that we are now crushing all of her pills and only feeding her soft foods that are easy to swallow. Yes, we are worried that she isn’t eating or drinking enough; if we can get a full 12 ounces down her every few days, then we count ourselves lucky and we supplement with melon to try and up the liquid intake. And, yes, she sleeps more and more each day; we’re up to 22 hours of sleep per day. Yes, all of that is correct.

But we also have days where she is wide awake for several hours and when she can even converse a bit, in her way, with those around her. She is always joyfully and patient and gracious to those who are around her, those who come to help her with bathing or toileting or eating. She is the consummate hostess, even in her bed, from which she almost never moves.

So I am committing to posting every few days, even if it’s just to say that things are the same. I expect you to understand that this is a slow slide and no news, and especially no change, is good news. Be joyful for Mom that she is comfortable and safe; rejoice that she is happy when she’s awake and peaceful when she sleeps. And don’t weep when you read these posts… I’ll do that for all of us! ;)

That said, this weekend we had some friends come and spend the weekend with us. They cooked and laughed and we enjoyed their company. On Saturday night two of them brought their guitars and a harmonica into Mom’s room and played and sang for her for an hour or more. They played all the old songs that we could think of, including Shenandoah, Red River Valley, Greensleeves, The Gypsy Rover and even The Yellow Rose of Texas. Mom laughed and sang along on a chorus line or two. She had a smile on her face thanked them over and over again when they were finished. She went to sleep with a big smile on her face. On Sunday, the day of the gathering, everyone took turns stopping in for a chat and a hug. One friend even sat with her and sang Amazing Grace with Mom. I guess it’s okay that Mom slept hard for the next three days, because she was wide awake and engaged for much of those two days. Good Times!!

Hard Things To Hear

When you enter the Hospice program you do so with the understanding that your loved one is within 6 months of death, as a rule. However, that is a vague, generalized notion and, with Alzheimer’s, that 6 month window can extend a good bit longer. It was in this setting that I was advised on Monday by the Hospice Nurse that, based on what she is seeing in Mom’s condition and behavior patterns, she doesn’t expect Mom to live more than another month or so.  A “drop dead date” as it were, for which I was wholly unprepared.

It has taken me this long to put this down on the blog because writing it makes it seem so final. And it isn’t. It is merely her professional opinion based on her years of experience with the process of dying. It is her professional opinion, in combination with one of my caregivers, who also indicated that she was bracing for the end of June, based on her experience. So I have wept, I have gotten my panicked, “What will I do and where will I go” attack out of the way and I am now focused on two things; taking care of Mom and making the most of the suddenly limited time that I have with her.

IN reality the time is no more limited than it was from the outset, but I am now feeling that limit a bit more realistically. She is sleeping even more than she was before. She hardly stays awake for breakfast and that is dropping down to just a few bites now, as her dinner has been for a while. These days her dinner consists mainly of melon and yogurt. She almost never finishes the yogurt. Breakfast is just a few bites of whatever the main meal item is, a bite or two of toast with jelly and, with luck, 2 or 3 of the most important pills. I am most often now giving her the morning pills with her evening meals. I can still get her to take them when the caregiver can’t seem to wheedle them into her.

The Hospice Nurse said that, before the end, many patients become more wakeful and engaged with the family and caregivers for a short period of time. She said, it’s as if they wake up to say good-bye and when they drift back off then they pass on soon thereafter. She said that families often think that they are improving, bouncing back, and then are devastated when death follows shortly thereafter. She wanted us to be prepared when that event occurs, so I guess that now we are. .

Our dog has gotten to the point where she is so anxious, in reflection of Mom’s anxiety, when we get Mom out of bed to use the toilet each morning that the only way she can be comforted is to lay on my bed where she can see mom and know that all is well. When Mom is finished and tucked back into bed to sleep, the dog then gets off the bed and goes on about her day. If she isn’t where she can watch Mom and know that she’s okay, then the dog stands outside Mom’s door and whines anxiously. This has proven to be a blessing because it tickles Mom to look over and see the dog there, watching over her. I’m not sure if she fully understands that the dog is concerned for here, but there seems to be a unity of spirit between the two of them that comforts them both.

Posts from here on out will probably be fairly unexciting… I don’t expect to see big changes in Mom, but I will try to wrangle my own emotions a bit more effectively so that y’all have a more timely understanding of Mom’s progress. My feelings don’t change things in the great spectrum of things, but sometimes they make it hard for me to sit and rationally lay out what’s going on. I know, I know. Big girl pants, Get ‘em on!

 

Bring On The Sun

A couple of days ago Mom finally woke up from her Post-Visit Recovery period and she has had two wonderful, wakeful days. Yesterday the Hospice bath nurse was here and, since Mom is always so wide awake after a full bath, as opposed to a smaller bed bath, we thought we’d try an experiment. So the nurse and the caregiver got her dressed, wrapped her in warm blankets and we wheeled her out onto the deck in the bright sunshine.

Mom had always loved to just sit outside in the warm sunshine and enjoy the sunny summer days in years past, but we were not certain if that would be the case anymore. We had suggested going out and sitting in her porch swing more than once, only to have the suggestion declined rather emphatically. We thought that, if she was already up and we just went there, then she might not object since the effort had already been made. I think sometimes that doing simple things is just too exhausting for her, but, other times, I think that it’s the process of even thinking things through with a brain that misfires at every other synapse that makes her so tired that she says NO without thinking about it.

I have to say, the clever ploy worked like a charm. She smiled as we went out the door and she oohed over the view and delighted in the few flowers that I already have out on the deck. The temps were in the mid to upper 70’s and there was a light breeze off the water, but she seemed quite content and even chatty, after her fashion. 

In fact, the plan worked so well that we are hoping to get her out on the deck, while we have some sun and unseasonably warm weather each day, if she will allow it. Fresh air and real sunlight never hurt a weary mind or body and its ability to delight and soothe a weary mind and warm that old body were quite obvious yesterday with Mom. And the gorgeous view didn’t hurt her eyes, either!

BRING ON THE SUN!!!

Visitors and Laughter

We’ve had lots of adventures of late. Mom’s youngest sister came to visit for several days and we had a continuing party! She spent most of the day, each day, sitting with mom and talking to her, watching movies with her and just giggling over everything that came up. They even stayed up until 9:30 or 10:00 several nights. The first night I made them stop giggling and go to bed, but then I realized that they were having so much fun, if it exhausted mom and she slept for a week it would be worth every minute of it to see her smiling and so happy. Well, by the last day Mom was worn out and she slept most of the day, but my Aunt got two or three days of visiting in, with more wakeful time that mom had exhibited in a long time.

And she has slept like a rock for most of the time since then.

She is also dropping her intake of foods and fluids dramatically. She still eats a good breakfast, but dinner is just a few bites, most days. We try to get her to drink as much as we can, but she often drinks only 6 to 12 ounces a day now. That is impacting her fluid output, of course, and that makes me worry about kidney failure when combined with her diabetes. The reduction in fluid intake can also impact her bowel movements, making them hard and painful. So we keep pushing fluids even when she declines them.

As a result of her dropping intake, she is also losing weight. I can now lift her up and hold her while the caregiver cleans her during her daily ablutions. We had to roll her from side to side previously, but this is much less painful and disconcerting for her, so, in a way, it’s a good thing. It’s sort of the upside of the downer.

We have had some very warm and sunny days of late and Mom is sleeping through much of them, but she is more fitful in that sleep in the mornings and willing to engage in movies in the early afternoon, so I am still hopeful that this summer may help her to be more wakeful and alert.

She has started seeing “family” again and has repeatedly called me by my father’s name when she wakes up in the morning, but is still groggy. She asked me yesterday if I was him now. I’m not sure what that meant, but what I told her was that he was one of a kind and I am not him, but I am taking care of her now like he used to do. She seemed to be happy with that answer and went back to sleep.

On a last joyful note, she has really grown fond of the dog now. The dog will come and lie on the bed while we take care of mom in the morning, watching over her. When we’ve finished, the dog gets up and goes back to sitting in the sun or prowling the yard for potentially dangerous sea gulls. Of course, she is always on stand by when Mom is eating. Recently, Mom woke up at one point, looked around and called the dog’s name. I asked her if she was looking for the dog and she said, “Yes.” So I called in the dog and she sat there and let mom pet her head for a few minutes until mom drifted back off to sleep. It’s good to see them becoming buddies!