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!

Laughing Through the Tempests

We are stepping up our game and getting the hospital style bed for mom. Not because she has declined, per se, but because she is having such a hard time getting into and out of bed. Yes, we did get the bed that moves so that we could help with that, but eventually it became too high also as her ability to settle into it decreased. So we took its legs off and now it’s the perfect height to get into… but it’s impossible to get out of when it’s that low and her joints are feeling so achy. So we are pulling out the stops, and the chairs in her bedroom, and having a hospital bed installed. Then maybe we can put the legs back on the bed so that I don’t have to feel like I need someone to come and pull me out of the bed each time I need to get up. I was going to rig the dog up with a sled dog harness for that purpose, but she identified her disapproval with that plan and I have moved on.

We are going through days when mom has frequent toilet runs each night, like every two hours, followed by days when she only goes one time a night. I obviously get more sleep on the latter nights, but both tend to make me worry that something is wrong. Therefore, I am working on practicing the great advice I was given by both the Hospice nurse and our friend the Alzheimer program nurse… Don’t fret over the day to day changes in her intake and output. Such changes are all part of the disease and are perfectly normal at this point. In fact, we have found that even her blood sugars are falling into line without any night time insulin. I know she is much happier having one less poke in her daily routine.  I know she shakes her fist at us every time we come in to poke a finger or her belly or even to poke food in her mouth. She’s still giggling when she does it, but I worry that one day she might just mean it!! It’s been a long time since she actually spanked me!

All in all, though, she is maintaining her happy disposition and is enjoying the blessings of life, in so far as she is able to do so. She is just taking life easy now, day by day. She’s sleeping in late and being waited on hand and foot… and that seems to work for her! I guess, after all those years of taking care of everyone else, it IS her turn!

The Garden of Eden

I got an email from a friend the other day after she had read my latest post. Her mother is in her 90’s and is in a more advanced stage of Alzheimer’s than mom currently is. She recounted for me this story and, upon reading it, I asked her if I could share it with you, and she agreed.

Thank you, Linda!

“On my last visit home, my mom told me and my brother, Tom, a wonderful dream upon waking.  Her eyes got really big, and told us of a beautiful garden with gorgeous flowers, and the light was so bright.  She was sad that she had to leave, and asked us why she had to come back like this.  She told us it was the Garden of Eden, and she wanted so badly to go back.  She kept asking why she had to come back because it was so beautiful and this place was not. 

We truly believe that God gave her a peek at what was to come, and nobody can tell us any different.  Mind you, this came out of a woman who has been in a coma like state, and barely able to speak at all.  Her account was very expressive, clearly stated, and detailed.  Tom and I rejoiced at being able to be by her side as she awoke and shared her dream with us.  Afterwards, she went back into a deep sleep and never spoke again for the remainder of our time with her.  God blessed us at that moment of time that we had with her.”

Visitors

We had a wonderful visit last weekend from a family friend who actually works with the Alzheimer’s Program at the VA Hospital. She gave us some wonderful insights into what we have been seeing with mom and she emphasized that we were stressing over much about mom’s minimal eating. She indicated that the eating will come and go and that mom’s body knows what she needs. Interestingly enough, she was right… Mom is eating again! And her fluid intake has picked up, as well.  We seem to have gotten things moving again throughout her system, so we are breathing a bit more easily right now. She still has sleepy days and wakeful days, but they are all cheerful… that’s mom’s loving gift to those who care for her.

I will also tell you that mom has been having some interesting dreams of late. She has wakened and asked if we saw my dad just now or if her mother was still here. When she wakes up she is very convinced that they were really here, so the dreams must be quite vivid. As she has had these dreams more than once, I feel confident that her loved ones  are dropping by and visiting her in her dreams… and she seems to be enjoying those visits. She is not having the “visits” while she is awake, this is not a dementia event, this only happens when she is asleep, they are simply dreams. But I’m not unwilling to believe that those she loves are coming to visit her in her dreams as she gets closer to joining them. I think that’s very sweet of them and both were much loved by Mom and by me, so they are welcome any time. I only wish that I could get in on the visits.

Intake, Output and Blessings

Mom is continuing to sleep more and eat little, but the thing that has me most worried right now is that she is not going to the bathroom very much. She is not having regular bowel movements and she has always been quite regular. She is taking stool softeners every day, as well as senna, to help with movements, but she has not yet regulated. The nurse indicated that as intake of both food and water drop, bowel movements can becomes less, but she also said that becoming more sedentary is even more a factor in her lack of regular bowel movements.

Even more worrisome to me is the fact that she is also not urinating more than two or three times in a 24 hour period, although she is drinking one to two 16 oz glasses most days. In that she has diabetes that can become serious. I believe renal failure is always a worry with diabetes, as her Doctor regularly tracked her creatinine levels, which are a measure of kidney function. I am at the juncture where I have to decide if I try to force her to drink more and eat more, or if I accept that her body is deciding for itself what it wants and I need to give her peace and comfort in which to let it do its thing. I don’t want to give up on her and just let her slip away, but I also don’t want to torment her in the last few months of her life. Everyone has their opinion of what the right thing to do would be, but I suspect, in the long run, Mom will decide for herself… as she has always done.

On a happier note, in late October we adopted a rescue dog, a 3 and a half year old Doberman. She came to us with a sweet face and a gentle nature, but she was obviously a bit nervous about her new life and what it would mean to her. In the ensuing 2.5 months she has come to trust us and we have come to love her dearly.

She’s a natural service dog. When mom is sitting in her chair the dog will go to her and just lay her head on the arm of mom’s chair and let mom pet her. When I put mom to bed at night, the dog will often stay in the room, in her bed next to ours, and sleep with mom to keep her company. Whenever I get a bit stressed out or feel like I’m on the ragged edge, before I even realize that it’s happened, she has her head under my hand and her body pressed against mine. Once, when I was very frustrated with the way things were going and let my tone get just a bit too sharp, she raised her head and yipped at me from where she was lying at the bedroom door. I didn’t get it at first, but after the second time I spoke with that tone in my voice and she yipped again, I got it… I took a breath and tried speaking in a more relaxed voice. She lay her head back down and closed her eyes. I’m learning to listen to her when she tells me something.

I must admit that, on more than one occasion, I have said that it was Grace that brought her into our lives and I still believe that. She has been a source of laughter for mom, who delights in watching her play with her toys or wrestle with me on the floor, she’s company for me and she’s a delight for all who have met her. I cannot emphasize enough what a blessing it has been to have her with us at this time when things can so easily go sideways. She’s the calm and always loving heart that keeps us all grounded…  and scratching her ears! She has truly become an invaluable part of our caregiving team.