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.  

More Clothes Than Good Sense

Took MIL out for awhile this afternoon. Just to Hobby Lobby and the park for the toddler's benefit. While in the car MIL was complaining about having too many clothes. She said she had more clothes than good sense. Immediately, she cracked a smile and said: "well, I guess that's not that many these days."

See what I mean about an intact wit? Sometimes she's so funny, for days in fact she'll be able to catch things like that. Then, all of a sudden she takes a turn for the worse and gets really paranoid, angry and confused. There's no predictability with the ups and downs of Alzheimer's, and it isn't a ride you can exit at will. 

I think that's one of the hardest things. The not knowing each morning what you'll wake up to. 

Last Tuesday when I woke and made my way to the coffee pot she was crying in the living room. Holding a cold compress round her neck. She swore she had a brain bleed, that she had had a stroke, that the eye doctor told her if she ever heard a pop and saw red to rush to the E.R., that if the doctor wasn't in she was to see the night watchman who will know just who to call. This type of self-affirming false memory is what makes this disease so darn hard to deal with. She was in a panic. There was nothing for us to do but take her to the doctor. My FIL did just that, after we both rearranged our schedules for the day. After the appointment was made, MIL was just short of jolly. It was such a strange, abrupt turn around. It's hard to remind myself that she doesn't do these things on purpose. 

The doctor confirmed to her that the  phenomenon she experienced was due to the Alzheimer's disease, and not a stroke. She, thankfully, believed him. And she's been upbeat and cheerful since then - at least with me. 

More clothes than good sense...

No Time Like the Present

Alzheimer's disease sucks. In fact, all types of dementia suck.

I've been thinking for awhile about reviving the blog. Something about the self-centered nature of blogging, and the line you can ride between angst and reality is calling me back. Also, my mother-in-law has Alzheimer's disease, and we live with her (and my father-in-law). One of her most prominent symptoms is false memories, or delusions, which for her are totally plausible and real. I find myself wanting to record these stories, snippets. If I weren't "in it" they would be so interesting. I want to revisit them later maybe, when it doesn't feel like I'm drowning. 

This is a different situation that other dementia patients I have been around. Namely, my maternal grandmother, who had mini-strokes, and my maternal grandfather who had dementia toward the end of his long life. My MIL (mother in law) was so young when she was diagnosed - only 62. 

It was March or April of 2014, and she and I had just returned from a trip to South Africa (her home) where we rendezvoused with her sister. What a trip! At the time, we didn't know it was Alzheimer's. "Mild Cognitive Impairment" is what the doctor was calling it. It didn't seem mild to me, her travel companion, who had herded her across oceans for days to get her back to the beaches of Umhlanga and Durban. She got lost on the plane on the way over. After traveling for literally a day, I fell asleep for about 30 minutes, and just like that, she was gone. When I woke up, I looked around for her, feeling a bit frantic, but telling myself that she was probably in the bathroom. I timed 15 minutes, long enough for her to have gone in, and come back out of the "loo." When she didn't return, I reluctantly rose to speak to the flight crew. After explaining to them my situation, that I was traveling with my MIL who might be slightly confused, one of them perked up and said, "Yes! A white haired lady with hair about to here?" He pantomimed hair down to his chin. When I nodded yes, he said, "But she seemed like she knew what she was doing."

She was brought back to me from business class, where she had been casually sitting, wondering where I was - all the while I was still crammed back in coach. 

That seems like a lifetime ago. Since then I have had a baby boy and several break downs. My baby is one year old now, and in some ways I wish I had been blogging the whole time. Living with a person with Alzheimer's disease and a new baby was the most terrifying year of my life. However, there have also been moments of great joy, and hilarity. My MIL is one of the most witty people I have ever known, and this trait remains in her, popping out when I need it the most. 

What will hopefully follow will be an account of life now, living with in-laws, one of whom has mid-stage Alzheimer's disease, with a husband finishing a PhD.(mine, not her's) and a one-year-old baby boy. The title of this blog is still applicable, and I will slip it back on like a well-worn sweater. I am still just waking slowing. Whatever that means. I will attempt to record some of the delusions that my MIL has, not to make fun, or be mean spirited, but partly because I need share about them, and partly because I want to remember them. I also want to record ways in which she is still very much here with us. She is fiercely protective of her children and grandchildren, and loves them with an enduring sort of love that is beautiful to behold. 

Anyway, for now, the baby is up from nap (45 minutes ug!) so....more to come.