And Just Like That...She Was Back

I don't mean back as in back to completely normal, before Alzheimer's disease status. I mean back in terms of a helpful and loving personality, someone who says "thank you" when you do something nice for them, the person who is doing dishes right now after dinner while my husband and I get the baby to bed.

Let me back up. Before Christmas we decided to join my in-laws on a camping trip about an hour and a half away at a state park. We were staying in two adjacent campers, so it wasn't quite roughing it, but it should have been peaceful and calm. MIL did not do well with the new environment, if you want a recap you can read this blog post. She basically hasn't been the same since - this is going on a month and a half. She has been angry, at times withdrawn, oppositional, defiant and, I hate to say it, just plain mean. Thus the hiatus from writing many posts in the last month and a half - because they all would have been completely depressing. I, admittedly, did not deal with this personality shift well at all. I have been angry at MIL - fully knowing that she can't control her brain and what it's doing, but unable to convince myself that she can't control her attitude. There have been bits and pieces of hilarity here and there - she did tell my husband that she has to pet a long haired dog every day to get the dog oil off its skin because it's good for you - but mostly we've been slugging through thick emotional and behavioral fog.

She was particularly out of it yesterday. FIL took her to a local grocery store and told me later that she had laid hands on a stranger and blessed them. Later, she wanted to go to the bathroom so she took her shirt off. At dinner, she refused to eat anything that was prepared for her and came up with a list of things she must not have that just happened to include any conceivable option that we had in the house for her to eat for dinner. It was a little bit like dealing with a young child who has just decided to not like what you've cooked, even when they've eaten it a thousand times.

Then, this morning she woke up very chipper, and just like that...she was back. She was making eye contact, laughing and joking, and indicating that she didn't remember anything about yesterday. In the morning, I couldn't even look at her. I can't explain it, but I wanted this clear-eyed MIL to be sorry for all the weeks that the other MIL had been with us, weighing us down. I'm still really freaked out by the whole shift, but tonight I joked with her and laughed...and asked her for a hug.

She hurriedly dried her hands, wrapped her arms strongly around me, and I sobbed and sobbed. I cried because this is a remnant of my friend. This is the mom figure I've known since I was thirteen. Parts of her were back, and I love those parts, and I don't want to feel too self-protective to enjoy them while they're here. I didn't tell her why I was crying. I just told her I was tired...and then she prayed for me. She prayed for peace, and a good night's sleep. Then she told me to go to bed early, cracked some more jokes, and that was it.

And now I'm just left feeling all this jumble of emotions - tired, sad, joyful, thankful, exhausted, hopeful and...angry - but not angry at MIL anymore, angry at Alzheimer's disease.

Exquisite Disasters

I wanted to avoid this account of my dealings with Alzheimer's disease turning into a sad collection of stories about a loved one slipping away. That's the direction I felt it was going after we came home from Christmas camping, so I decided to take a break. I must admit that between then and now there probably have been some funny stories relating to my MIL's Alzheimer's disease, but I have been unable to find the humor in them until the last few days. I do remember some stories that I found funny, but they were of such a personal nature that I would never publish them on the internet, even without names. One of the aspects of Alzheimer's disease that I find so hard to confront is the loss of dignity, and I never want to contribute to that with my words here.

Lately, the manifestation of false memories has mostly revolved around places that my MIL has "definitely been before," or people who she has seen already "for sure." There is a new focus since Christmas, and that is aluminum in all shapes and forms. Last week FIL was driving MIL back home in the rain, and she insisted that if he were to stop, we would find aluminum knitting needles in the gutters, because they would have washed down from where all the people who are collecting them have them stored. Yesterday, she insisted that her teeth hurt worse when she's using her aluminum knitting needles, as opposed to her plastic ones. At dinner last night, she used a spoon (probably not aluminum) and after she pulled it out of her mouth, swore that it had magnetized to her tooth.

These delusions are so interesting to me because she has been explaining that someone told her she should get more aluminum into her body, and the fact is that Alzheimer's disease has historically been connected with aluminum, but exactly opposite to what her delusions are telling her. Alzheimer's patients have been encouraged to avoid aluminum exposure.

She continues to do well on her additional anti-anxiety medication, and since we came home from the camping trip, she has been more pleasant and less paranoid, although she did tell me this morning that she has figured out that my bathroom mirror lets me see into her bathroom. Hm?

She's been knitting up a storm, as long as I cast off for her. She begins with a small number of stitches and slowly adds so many stitches to the needle, by accident, that by the end of the project the needle is so crammed full of stitches I can hardly cast off without slipping a ton of them. Every piece comes out bell shaped. She told me this week that she wants to name her knitting collection "Exquisite Disasters." which I think is awesome. She maintains her humor, albeit very bizarre sometimes. Just this morning as my FIL was bottling some homemade kombucha, MIL said "Did you see the SCOBY, it's going to give me nightmares! It did gyre and gimble in the wabe." Oh look- another Lewis Carroll reference.

Have Yourself A Crazy Little Christmas

Christmas day found our family all split up in three different vehicles doing the hour drive back from a nearby campground. There was no internet to be had the three nights we were camping - I like it that way- but I had a post all planned about how nice it was that MIL's new anti-anxiety medicine has been working wonders for her happiness, and how she's inspired me to take up knitting again because she is knitting feverishly lately - albeit pretty erratically technically speaking.  

I had hope for this happy post about our family having a cool holiday camping, and how it's all worth it for the moments when we're all together and enjoying each other's company. I want to be that person, and I want our situation to be that situation. And sometimes it is, but it wasn't this Christmas, and that's the truth, so that's what I'm writing.

When FIL came to get my husband, baby boy and I to haul us plus the camper to the camp ground, I offered to take MIL in the car with baby and I so that she and I could chat. Up until this trip, we have been able to joke with each other on trips in the car, and maybe there would be a few non-sequitur thoughts that surfaced, but nothing that I couldn't quickly turn back to a "normal" conversation by a joke or a distraction. This time was different, very very different.

Maybe it was a combination of the fact that she and FIL had already been camping for a few days, coupled with the progression of the Alzheimer's disease. She was fixated on telling me about how she had had a vision of mice and rats on the day that she thought she had a stroke.  She said that the doctor asked her about what she saw, and told her that it was actually right on target because mice and rats are a sign of the end of the world coming. I tried my best to just listen. At one point in the car she said out of nowhere: "Water running off the edge of nowhere, and rats and mice running around everywhere..."

After we got to the campsite she continued persistently talking about how the world is running out of aluminium and we need horses and goats to roam all over to help bring the soil back. Each time she lost sight of FIL she thought that he was going to pick up someone from the airport, but when I asked her who, she couldn't quite figure out which friend or relative she was thinking of. The entire four days were taken up with these delusions, and anger. Finally, on Christmas Eve, we made a plan to bring her back home early. It was pretty clear that she can't handle the stress of being in a new place, especially showering and changing clothes in a new or different space. So, we opened gifts on Christmas Eve and had a nice meal with my own mom there too (thank Jesus). MIL talked about how some doctor or other told her she must get stung by a bee, or maybe a flea, to help her mild epilepsy get better (she doesn't have mild epilepsy).

And now we are home. MIL is laying on her bed quietly, where she has been for the last hour or so. I don't know what to make of what happened. It was the weirdest Christmas I have ever had. Alzheimer's is hard man. My family is awesome though.

Haircuts and Hand Signals

I have never been a part of a support group until now. A couple of months ago, I started going to a Dementia caregiver's support group, and it is so helpful. Today was support group day. My mom came over to keep baby, and offered to stay with MIL if FIL wanted to go. I cannot believe how blessed we are that this type of help just shows up. Other people in the group have talked about how hard it is to coordinate care for their loved ones while they are away. One man in the group told me that it costs him $30 to come to group, and $50 to go to church. He pays home helpers to come look after his wife. At least for now, we don't have to deal with any of that. I'm struck by how rare this is. 

FIL decided to take MIL on a walk today instead of going to the meeting. I hope it was life-giving for him, but I fear that it wasn't quite. When I came home, and after I nursed baby to sleep for nap, I sat down at the table to have lunch with MIL. She is very agitated today. She heard FIL making a phone call and shushed me so that she could listen in. This is a common occurrence, and has become more frequent with the ramping up of her paranoia. "Who are you talking to?!" she asks him after he hangs up the phone. He answers, and she proceeds to tell me right in front of him, "I don't believe that was S., I think it was D. - he's trying to get in on getting fixed up at the place we're traveling to." She's referring to a delusion I wrote about in a previous post - one about a place you go to where you get healed of everything. Sometimes in her delusions, you have to shave your head to go there, but they make it so your hair grows back in the exact same hairstyle you had before, so that way the money you spent on your last haircut isn't wasted. 

On their walk, I guess they saw a neighbor out cutting his hedges. She became a little obsessed at lunch telling me that he gives them hand signals as they walk by to tell them how fast they are walking. One of the troubles with the delusions is that she so aggressively needs others to confirm that they are true. That is, at times, impossible. A man at the support group said that we should just say "ok." when she has a delusion. But MIL knows when we are being disingenuous. She picks up on that quicker than most anything else. 

I've been feeling really worn out recently, and its been hard for me to find the good in what is happening. MIL has been knitting again, so that's a good thing. Anything that she will do independently is helpful at this point. I'm going to try to rest now while baby is sleeping. Wish me luck.   

Roles Clash

I tend to push myself too hard. I have always done this. When I work out, I only know that I'm at my limit when I physically can't lift the weight one more time. I do life this way too. I get the feeling that this isn't very pleasant for the people around me. I do and do and do until I just can't do one more thing. Then I'm out. Except when you're a mom to a small baby you can't just be out. Especially when your husband is finishing up a PhD. Especially when your MIL has mid-stage Alzheimer's disease.

Today was actually a very light day of care giving on the Alzheimer's front. A family friend picks MIL up most Mondays and hangs out with her for a few hours, and today was no exception. If you know a family who could use this kind of help, and you're in any position to give it, let me urge you to do it. It makes such a difference to get just a few hours to regroup. 

I am not the main caregiver for my MIL. My FIL does the vast majority of care giving for her, and I am around and interacting with both of them, and am a sort of stand in for her comfort person when FIL is unavailable for one reason or another. So, when this family friend picks up MIL, it's nice for me, but I think the real blessing is bestowed on FIL. I hesitate to speak for him, but I think the both of us are oftentimes just hanging on, just doing the best we can from day to day. 

I'm stuck in a weird place. I recently saw this ad by AARP: 

My immediate thought was: "Where's the ad for ROLES CLASH?" Talk about sandwich generation - start out with a somewhat late in life pregnancy, then add in early onset Alzheimer's disease, and we're the poster children for role mash up. I don't know how to manage these two things. The vast majority of my breaks from MIL include taking care of baby, and a good bit of my breaks from baby include at least interacting with MIL and her delusions. Sometimes, like today, it's enough to make me want to run away. My own mother came over to play with baby this afternoon so I could take an hour nap, which was awesome, but you know when you're so emotionally empty that an hour just feels like a drop in the bucket? That is me today. 

My fear is that anyone reading who isn't intimately familiar with the day in and day out strain of being a caregiver will roll their eyes at my descriptions and write me off as melodramatic. I do, admittedly, struggle with depression and anxiety, as well as sleep deprivation due to aforementioned baby, which on its own will make anyone feel really rotten. I think we're in a cycle at this point, in which I am stressed about living with a demented person, so my son catches that vibe and is stressed out and doesn't sleep well, and then I'm more stressed. We keep passing the stress vibe around like a virus. I don't think there's a solution. That's the depressing thing about Alzheimer's disease. It doesn't get better. It's one thing to know that, and another thing to live it. 

Cookies and Ex-Lax Soup

I like to get up before everyone else in the house. I have to, it's survival. I have never never never been a morning person. I am not cheerful in the morning. I am sluggish until my second cup of coffee has been drained slowly. This morning, I accidentally snoozed my alarm from 6:30 until 7:50, I think mostly because I was having a dream about trying to wear roller skates on roads while obeying the driving laws in a country where they drive on the "other" side. Actually, that's a pretty good analogy about how I feel in life these days. I have no idea how to be a caregiver to both a one year old and a person with Alzheimer's disease, but I'm doing it, because this is life right now. 

This morning, I was happy to realize at 7:55 that no one else was up yet save for one of our two dogs. She followed me out to the kitchen where I started the Keurig machine brewing my giant cup of coffee. I watched the liquid pour into the cup, then slowly began to fill the water carafe when suddenly there was a human behind me. MIL realized that she gave me a fright, and started giggling. The following story was the source of her giggles. It does not make sense, but I am going to try to record it as it happened (omitting names, as always). Absolutely none of it is true. This was my first human interaction of the day.

MIL: FIL threw out a huge container of soup yesterday that S made! She brought it over because she has worked out how to make a soup that makes you go to the bathroom.

Me: Oh, maybe you're thinking of the chicken soup that I made. He threw that out yesterday because it was old. 

MIL: No! S brought over a HUGE container of this soup. I guess you told her that you were having trouble, or that baby was. Anyway, Dr. J said he was really impressed with S's soup last time we went in to talk to him. He said that she formulated it to help people who wanted to try something before they get enemas.

Me: Wow!

MIL: Yes! And now FIL threw it out into the yard, because he dipped one finger in it and tasted it and said it tasted funny.

Me: Well, there are going to be lots of squirrels with diarrhea running around the yard. 

MIL: And the dogs! We'll have to watch them! S specially made this soup so that it would help people who need to go. The doctor said she was a little off the mark though. She also teamed up with P to make food for prostitutes. P makes cookies with something in them that helps fight venereal diseases.  

Me: Wow!

MIL: Yes! And S is making soup for the prostitutes because they sometimes just don't take care of their bodies very well, and that can make them sick, and they need to go. 

Me: Well, I'd better go get the other dog up and let her out to pee. 

fin

I hope my interactions with MIL don't come off as disrespectful or mean spirited. All the books, and I have read SO many, say that you shouldn't contradict the person who has Alzheimer's disease, but rather enter their reality. I still can't totally do that, but I try sometimes. To enter a reality where cookies can cure v.d. and squirrels lap up ex-lax soup in the yard. It's a sort of bizarro Alice in Wonderland don't you think? And that story was already crazy as.

Heaven Sounds a Lot Like South Africa

I can't be trusted to make good purchasing decisions when I'm out with baby and MIL, not even if my own mother is in tow helping out. That's why when I took MIL and baby to the farmers market today, sans my mom, I decided ahead of time not to buy a thing. It's not that any one of us wants to buy things very badly, it's just that with two people needing my attention, I can't think clearly and end up buying the whole of a market stall or grocery isle, and then wondering when I get home how I'm going to cook 17 rutabagas and a jar of local honey.

FIL left for a meeting this morning, which means that MIL followed me around too closely, bless her, while I wrangled a 12 month old into his high chair and cooked and fed him breakfast. She and I have always had a good rapport, even when I was 16 and pining after her son, so now at 33 when she follows me, I know she's just seeking a connection with another woman, a mom...friendship. I remind myself of this fact about 300 times while she is trying to help me feed baby breakfast by picking up and feeding him dog hair encrusted bits of food that he has flung to the floor once already. I want to accept her help. I really do. And I am so tired.

This morning she touched on two major false memories that have been persistent over the last couple of weeks, if not longer. As we got dressed and ready to go, she mused over yesterday's trip she took with FIL and baby to the mall. "I hope our going to JC Penny helped convince them to keep it in Waco a while longer, and not move the whole store to Austin." She has this idea that there is a plot or campaign to make our town look like it is a bustling metropolis. This will be accomplished by making certain people go to certain places in town to be counted, thereby proving that these stores and attractions are worthy of staying in town, and not moving to the more populated Austin.

Each day she comes home from some outing or another exclaiming that she's saved more stores from being packed up and shipped off. A harmless enough delusion on good days. But on bad days I know she gives FIL hell about it. On bad days she will say that she doesn't "like this game." She doesn't want to do it, doesn't care if anything stays in Waco, and she's tired of being made to go to the zoo when its closed and the animals are all gone.

In the car on the way to the farmers market, MIL talked at length about how she and FIL are going on a trip soon. This is a common delusion these days, the story of which varies from day to day. It is consistently to a place where they will be healed of most of their ailments, all they have to do is write out a list of what's wrong with them, and these amazing doctors at this place will heal them right up. A few weeks ago when I asked her where this place is, she answered, "oh you know, up near Canada, but then you have to go down to South Africa." At times this place sounds like heaven, which would make sense because for her South Africa would be heaven's capital.

Today though, this place started to seem more like hell. She was upset that the doctors there would be giving her all kinds of sedatives to test if she really has Alzheimer's disease (a percentage of people with Alzheimer's can't be given any sedatives because they bring on hallucinations, and she is one of these type - that part is true). She was really sad because they were also going to feed her melons, to which she is allergic (truly). My attempts at distracting her by talking about scenery didn't help, and my naming of her feelings, "that sounds like you're feeling really anxious," didn't help either. In fact, by the time we were 5 minutes away from the market she was so physically upset that she said her toes were tingling.

I offered to take her home, and honestly at that point, I would have gladly turned around because when she's having a weird day or moment, I get nervous about how she will act around other people. She was so brave though, telling me that it would be better to just go for a walk than give in and go back home. So we walked the market. And she was pretty weird. And she complained the whole time about one thing or another. I have to believe that it's worth it though, even though she seemed to have a terrible time, I didn't buy a thing and my stomach was in knots for most of the experience.

We're home now, and baby is napping. I'm in my PJ's so it's time to read a bit before I have to be back on.