Variables

We had two great weekends of family visits, back to back. Mom was engaged and participated in the fun until late in the evening on several occasions. Now, however, we are in a sleepy, catch up mode. At least I think we are…

It was typical, in times past, for her to sleep for a day or two after being so engaged. It is exhausting for an Alzheimer’s sufferer to have to be on alert and processing status for long periods like that. Thus, extended periods of rest afterwards, is to be expected. This time, however, there may be contributing factors and we are trying to wade through things to be sure we know what we’re seeing.

She has been having that pain in her right shoulder and wrist, so Hospice has prescribed a medicine for her that might be making her sleepy. It didn’t seem to have that affect the first day she was on it, but the two subsequent days have been very sleepy days for her. We are not sure if it’s the meds or the exhaustion that are making her sleep most of the day and be so hard to waken in the mornings.

Also, she could be dropping into another phase of the disease. She is not willing to get up at nights any more to go to the bathroom. We have moved her from Depends to heavy duty diapers for the nights as a result of the obvious issues related to sleeping through her potty runs. The breakdown in her ability/willingness to get up at nights could be just because she is in recovery mode, or it could be an indicator that she is moving into a more somnolent and less cognitive phase of the disease. Again, only time will tell us which of these three possibilities is correct.  

I will say that she totally enjoyed having the kids and grandkids come and visit her. She may not have known, at all times, which person, exactly, they were, but she knew they were hers and she knew that they were delightful and loving company. She chatted and shared kisses and giggles with all of them. The fact that she stayed awake and engaged until late in the evening, for her, was proof of that. You cannot know how much those visits are appreciated… even with the exhaustion that follows them. We can sleep anytime, it’s a blessed day when we get to laugh and play with the people we love!

Love and Laughter

I think I’m slow in writing these updates sometimes because it seems like they are always so sad… I’m not sure if I’m concerned about worrying you or if I’m concerned that I will begin to feel despondent from putting it all into black and white. But it isn’t all sad, so let’s get the downs out of the way first and then we can dance with the ups at the end.

Within just the span of a couple of weeks we have seen a noticeable increase in incontinence. Where, two weeks ago it was an occasional happening, last week it became an at least once a day thing and this week there is no pretense left that she has any control. She still will ask to go to the bathroom once in a while, but she will have already saturated her Depends by that time from a previous need to go that she missed. That is fine, of course, because that’s why we have Depends. It just highlights a decline… for now. As you have probably figured out, with Alzheimer’s she can decline for a while then bounce right back. So maybe next week we’ll have no incontinence at all. 

She is still eating a good breakfast, but later meals are sort of hit and miss. We try finding foods that have a lot of flavor and distinct form for her to eat. It seems that if she can’t tell what a food is, then she is less likely to eat it. For example, she will eat steak and potatoes and veggies on her plate, but if you put them in a stew, they are less defined in form and, to her, less palatable. She will no longer eat old favorites such as stew, spaghetti, and even grits for this reason. Softer foods will become safer at some point in time, but right now interesting is our key. There are some foods that she likes, but which elevate her blood sugar. A particular chain of Chinese food, for example, will send her blood sugar up 10 or 20 points in the morning, but she loves the flavors and consumes it with relish. Thus, we set aside our worries about blood sugar, at this point, and buy enough to give her a couple of good meals. At this juncture, a day or two of high blood sugar is not going to hurt her and keeping solid food in her system is a huge offset.

My brother came to visit this past weekend and we had some friends in for dinner. The noise and laughter had her attention for a while, but she tired about 7:00, her usual bed time, and asked to go to bed. She slept for about an hour, and then she wanted to get up and come back in to join the party. She stayed with us, laughing and having a bit of dessert, until 9:30.  She was engaged and conversant, in so far as she was able to be, the whole time. She really enjoyed the gathering and, when the guests began to rise and head home, she was ready to go back to bed. She slept in the next day, of course, but she really loved having the family and friends here to visit. Did she recognize my brother at first? I don’t know. But he sat with her and chatted with her about his sons and their adventures and she relished every minute of the time she had with him. Tomorrow my sister and one of her daughters arrive for a visit. They are bringing my niece’s boyfriend along to meet mom. Being surrounded by women all the time, mom truly savors the company of men, of any age. I hope she’ll at least TALK to her daughter and granddaughter with that handsome young man here!  I bet everyone gets a chance to sit and talk with her… she is, after all, the consummate hostess!

In With the New!!

Mom is such a trooper. When a new bed that is NOT what she’s been used to for years arrived in her room and she was told that it is now her bed, she smiled and said “Hot Dog”! She is sometimes confused about which bed she’s getting into in our middle of the night potty runs, but she settles in easily where I direct her. Her willingness to go with the flow constantly amazes me and, as I hear tales of others who are going through this process with much less grace, I am grateful that she is so gentle and loving by nature.

The hospital bed has made things easier for us, though. It moves up and down at the head and foot, just like her bed did, but it also raises and lowers from the floor to make getting in and out easier and, on down the road, the caregiver work that may need to be done will be easier, too. I don’t think it has the softest mattress, but it is a much more comfortable than an equivalent bed in a hospital. I’m looking into a mattress topper to soften the bed up a bit more. I just need to find one in extra long twin.  I did order sheets and a new mattress pad for it, so I will wait to see if the plush mattress pad offers enough added comfort to make the mattress topper unnecessary.

Mom’s shoulder joints are starting to ache a bit more as we have to work harder to move her from place to place. We try to be as gentle as possible, but the pulling up and down wears on her, none the less. There is an item called a Gait Belt that we are using as much as possible. It is just a heavy duty canvas belt that we put around her waist and we use it to lift her as much as possible. I have to admit that I am also feeling a bit of strain in some of my joints from bearing all of her weight when I lift her from bed or her chair. She is getting so weak that she really can’t move herself from either without help and letting her balance herself when she tries to stand is becoming a risky prospect. She never stands or walks these days without someone else holding on to her just to be safe.

The incidents of bladder incontinence are becoming more regular and are not just confined to night time now. However, on some days she is more alert and in control of herself and everyone else in the house!  That roller coaster ride that the nurses said we’d be on… wheeeeeeeee!!

We have cut out the night time insulin completely now. She really is balancing her sugars very well with just her after breakfast shot. Some days she really only eats a big breakfast and a nibble for dinner, but other days she will have all three meals to some extent. Yet, whatever she eats, her body is adjusting and controlling her sugars nicely. But then, she always was an over achiever!