Sunday, July 19, 2009

Could the Meds Be Working?

Yesterday I hosted a 10th birthday party for my nephew at my place. Mom and Dad were there, and I was very anxious to see how Mom was going to do at the party since the last time she was over it didn't go so great. The past two weeks have been relatively quiet. My Dad hasn't called me with any "stressed out" emergencies. I was actually starting to miss them because they were the only time I could get up to speed on how things were going with Mom.

I emailed him a few days before the party to ask how it was going, and he said that it had been going quite well. He had moved some of her medications to the evening, and this made it easier for him to control them and watch her taking them. This is really the first time she has actually taken the Aricept and Namenda consistently for more than a few days. And I think it might be having some positive effect.

The party ended up going really, really well. I was amazed at the enjoyable time we had with Mom. Usually she has a sort of dazed, sour look on her face like she was unhappy all the time. This day she was smiling and cheerful, and really carried on some good conversations. She repeated herself a few times, and forgot a few things, but otherwise it really went great. I don't know if it was the medication working, or if it just turned out to be one of the really good days.

Here's another thing. After dinner, I went outside to relax and I heard dishes clanking, like someone was cleaning them. My first reaction was to run in and insist that Mom sit down and relax, and that I would do them later. But then I remembered that she had asked me several times if she could help and I said no. I wasn't really thinking when I said no, I was just rushed and didn't feel like delegating a task to her. So I decided to just let her do whatever it was she was doing, figuring if she was putting the plates in the fridge and the mayo in the cabinet, I could just put it all back the right way later.

I came in later and saw that she had cleared all the plates and had all the silverware soaking. That probably doesn't sound like a big deal, but I had not seen my Mom complete a task like that in FOREVER. Usually she starts, then gets sidetracked and forgets what she was doing. Again, I wondered if it was the medication starting to help.

For a split second I regretted setting up the meeting with the Memory Care center tomorrow afternoon, but then I remembered the purpose I was going was just to gather information and get help for my Dad. So we are still going. I am very excited and nervous to see this place and what it has to offer. Seeing Mom do so well really threw me for a loop. Now I can see the roller coaster that Dad is on. When you see these glimmers of the "real" person there, it does make you want to set everything aside and to convince yourself that things are "better" and you can put off addressing things that need to be dealt with.

My Mom announced that they were going on a long weekend trip to Florida next weekend... on an AIRPLANE. Mom is scared stiff of flying, and hasn't flown since BEFORE 9/11. So this was a shock to me to hear. I know that my Dad wanted to go down to their condo to get a few repairs done before the fall. Looks like Mom asked to come along, and he decided to try it. I think he is as amazed as I that she doesn't seem to be afraid at all. Maybe she has forgotten that she is afraid of flying. The whole thing makes me really nervous, though, because I worry about Mom changing her mind at the airport, on the plane, wherever. The last time she flew you didn't have to go through all those x-ray machines, have them poke through your purse, take off your shoes, etc. That is going to freak her out.

That's the one thing that I feel my Dad is not coming to grips with. When she says "Yes" to something she usually forgets what she later, and then an argument ensues. This isn't a normal, rational person he's dealing with, but sometimes he still treats her that way. And if she changes her mind, or next week insists that he never told her that they were going, he's going to get all upset and say "But you SAID you wanted to go." I hope that doesn't happen.

Wednesday, July 15, 2009

It's No Joke

This is going to sound ridiculous but I was just thinking today about how my Mom and I used to joke about Alzheimer's. This was way, way back, like in the late 80s-90s. But it's embarrassing to admit that we joked about it. If one of us would have a lapse of memory, lose something, or forget a name, we'd joke that the Alzheimer's was setting in. At one point my Mom got on this big "anti-aluminum" kick. Supposedly somebody somewhere said that too much aluminum caused Alzheimer's. I don't even know what foods aluminum are in, but she would always caution us. We'd usually giggle and roll our eyes.

We teased Mom a lot about all her "health tips". When she'd start babbling about the latest supplement, we'd laugh and say "Here comes another one of Momma Von's Health Tips." Nobody ever had the nerve to come out and say it, but she didn't have much credibility with us because she was blatantly ignoring the biggest "health tip" of all - to lose weight and exercise. Thinking back, I am amazed at all of the different supplements and potions my Mom took for various things. None of this was prescribed or even recommended by a doctor. Mega doses of Vitamin C and Vitamin E. This nasty mineral thing she would drink. Some pills called "Vital Veggies". Liquid "oxygen" drops. There were hundreds of things I can't even remember the names.

For quite some time she would stir this yucky green powder into her juice in the morning, it was called "Barley Green". As she would stir it in and drink it down, she'd say to me "This here is BRAIN food, taking this will keep me sharp as a tack in my old age." I even was so convinced I took it for awhile. When we'd go out for dinner she'd get out a big baggie of all of the pills she had to take. Mind you, she was not a prescription pill junkie, or a diet pill junkie. She was, well, a "supplement and miracle cure" junkie.

When she had a heart attack and made it through a triple bypass back during that big power outage in August 2003, she attributed her ability to get through it to all these supplements. She'd say "I hadn't taken all those healthy things, I wouldn't have made it." But what about the heart disease that caused the heart attack in the first place, Mom? What caused that?

I am just now drawing a parallel between her blocking out the fact that her weight/diet/activity level was the cause of her heart problem, and her blocking out any admittance that she has Alzheimer's. Back then, she knew very well that she was overweight, and couldn't cope with it, so tried to compensate with all the pills and potions. I think once she realized that she was headed down the Alzheimers path, she followed the same pattern of not being able to cope with it, so just ignores it all today. She doesn't even take the medications on a regular basis. So sad.

That's got to be what happened. Only a few short years ago, when both of her parents were suffering from Dementia and Alzheimer's, she would constantly fill me in on stories about them. How bad things were getting for them, how sad it was to "lose" a parent, but still have them there, how hard it was to see them that way. Dozens of times she'd laugh nervously and say, "Geesh, I hope that never happens to me." And I thought the same. But I thought it would be years before any of us would ever have to worry about such things.

Little by little, I saw her withdraw from them. The visits because less and less frequent. The visits were replaced by checks that she would give to her sister to buy things for her parents, in lieu of a visit. Then she started saying she was "too old" or "not well enough" to make the trip to the nursing home. And finally there was the turning point that I mentioned way back at the beginning of this blog, my grandpa's death. By then she had stopped talking about anything. She was cold and distant when talking about him. She seemed to remember only the bad stuff about his illness and all the good stuff just seemed to have faded away. By the time Grandma passed awaya year or so later, she almost matter-of-factly told me about it, like it wasn't a big deal. By this time she must have been heading down the path herself, and knowing it.

Nowadays, she doesn't even realize her parents have died. She asks to go see them, but doesn't really talk about them, no happy memories, no nothing. And when we tell her that they are not here anymore, she just nods and jumps to a different topic. I haven't hear her utter a word about Alzheimers or Dementia in the past few years. The playful teasing is gone now that the disease had taken hold.

Nope, this is definitely not funny anymore.

Monday, July 13, 2009

Talking to Alzheimer's

The other day I was on one of my routine bookstore trips to check out the Alzheimer's section. I've read a few books thus far, some great, some so so. I'm one of those book junkies who every time I have a life event, I have to buy a bunch of books about that particular topic and drown myself in knowledge. It's just the way I work. So right now I am quickly adding a new Alzheimer's section to my bookshelf.

Thus far I would say the best book I've read is "The 36-Hour Day". That was recommended to me by a friend of my aunt's, who was caregiver to her husband. But it is one of those books you have to take in little doses, because the reality of everything is RIGHT THERE, smacking you on the face, kicking you in the gut on every page and you are constantly thinking "How in the hell am I going to be able to do this? And how in the hell is my DAD going to do this." So I've had to take the book in small doses. That way I just get smacked and kicked only once or twice a day rather than all the time.

On this particular trip I found a small, handy little book that was quite different than all the other books. The book is called "Talking to Alzheimer's - Simple Ways to Connect When You Visit with a Family Member or Friend", by Claudia Strauss. The book was short and immensely digestible.

My Aunt Judy had already given me the simple, but best "in a nutshell" advice when communicating with someone with Alzheimer's. In her words, " What ever they do or say, just agree with 'em." That is really what this book is all about. When a loved one has a lapse of memory, or tries to argue, we are to agree with them, sympathize with them, compliment them, demonstrate to them that they still have value. This will put them in the happiest place, which is where we want them to be.

If you want my take on it, you could summarize a lot of the recommendations as "Be Phony", which really isn't fair to say. But I am the type of person who likes to argue a point, prove I'm right (I am my father's daughter after all), and pretty much say how I feel. And I am supposed to calmly tell Mom "Gee, that's an interesting story! I can't believe you never told me that" when she repeats the same damn story for the 1,435,573rd time in one day? OOOHHHH BOY. This is going to definitely be one of those "reread and refer to often" books.

We are not supposed to lie, however. But we have to convey to Mom "emotional truths". So while I know that Mom has told me the story 1,435,573 times, I need to focus on the fact that she wants to feel like she's contributing to the conversation and that she's worth something to me. If I tell her she's told me the story before over and over, and act annoyed, this hurts her, which I really don't want to do. The book says that we should convey in our interactions with them "all the things you would want for yourself", like love, sincerity, truth, respect, genuine interest, enjoyment in their company. So saying "Gee, what a great story" is not lying, and builds her up much, much more than saying "Come on, Mom, you keep repeating that story over and over." The "emotional truth" here is that I love Mom, and I want her to feel that love in my words and actions.

What was discouraging was that I learning in the book that many of the ways we have been reacting to her lapses in memory are dead WRONG, and have likely been beating her down and making her feel worthless. This in turn makes her more difficult and unpleasant to be around. Thinking back to that "Key Lime Pie" episode makes me cringe. We've all got to get it in our heads that people with Alzheimer's may have trouble with mental processes, finding the right words to express the meaning in the heads, but their feelings are still intact. They feel pain, embarrassment, joy, humor, other people's interest in them, companionship, loneliness, and boredom. They can feel useFUL, and they can fell useLESS.

Yeah, that's all easy to preach about, but putting it into practice is REALLY going to take some time, especially for someone like me who is easily annoyed, lacking in patience, and just overall not that touchy feely. Yet another self-improvement project for me to work on. They say God gives us these experiences in our lives to help us grow and improve. THIS student is going to be QUITE a challenge to teach.

Anyway, it's a good book. Now it's time for me to go learn how to talk "fluff".

Tearing Out My Hair, Over Respite Care

Last Thursday was another one of those blowups. This time though it was a "combo". He packed his bags to leave (over an argument about her not letting him manage her medications) AND he went golfing rather than the usual trip to vent to me. Mom called her sister and said this time he had left for good. Her sister checked with me to see if I'd heard from him. I said he was probably just golfing and she was mistaken. I left him a voicemail to ask if he had "left" or was he just golfing. Dad called me after his golf game to tell me it was actually both. And as usual, he went back home.

I got really frustrated that night. I was getting really tired of sitting here watching this stupid scenario play out over and over. She's not going to ever magically change and become compliant all the time. NEVER. I don't think he's come to the point where he has really accepted that. I've chatted with him about respite care many times, and he would alway balk a little then say yes, he knows it's something he needs to do. But when I try to push a little harder, trying to discuss who we might call, where we might go, he steps back and says that things are actually going a little better that particular day, so he doesn't need to worry about that right now.

I sat there tossing and turning that night. I have nightmares on a regular basis where my Dad dies from the stress way before it's Mom's time to go. Where I end up being the one who is faced with making the decisions, and bearing the brunt of Mom's anger and accusations. Where I am overwhelmed with guilt because I am not any where near as patient as my Dad, so I would end up putting her in assisted living immediately without question. Where I avoid going to see her because I can't take the crying and abusive comments, just like she did when her parents were suffering from the same disease.

I got online and searched for the website that Dad said he would "put her in when the time was right." I thought, how could you possibly know you would "put" her somewhere that you have never been? It is time here to start checking these places out, and find out what they're all about. We can't wait until the point that he goes over the edge and can't take it one more day. How would we have the presence of mind to make the right decisions so hastily?

The site popped up and mentioned a service that caught my eye. "Short-Term Respite Care". WOW. I never knew this type of service was available in a memory care facility. Apparently it is not something that is offered much out there. But it seemed like a godsend. Right now Dad can head out for an afternoon of golf and not worry (too much) about her. But he can't go away overnight or for a weekend, or just fly down to his condo in Florida (like I am sure he would love to). This type of respite care would make those sorts of things possible, AND it would allow us to get a taste of the facility before having to place her somewhere permanently.

I was so gung ho I was sure he would go for it immediately. Yeah, there was the part about getting Mom to go there, yeah that would be an even bigger challenge, but I was sure that the people at the facility would be able to teach us ways to do that. They're the experts and they've dealt with this hundreds of times. The director sent me some great information and we had an awesome talk on the phone. I felt lighter and happier, like I had made this great discovery that would help get some of this pressure off of my Dad.

NOT. When I sent him the info he just sent me a terse reply saying that he didn't think he was ready to "put Mom in a nursing home". Well, it felt like a terse reply, but more likely it was just a man overwhelmed with so much grief he doesn't want to face any more difficult stuff right now. I tried my best to convince him that I wasn't asking him to do that, I was just wanting to find out about respite care, and get the info about this type of facility so we knew what to prepare for. And to take advantage of all of the resources they had there to help us.

Eventually he agreed that he could "probably" meet me there at the facility next Monday. That's the closest thing to a commitment I am going to get, so I'll go with it. I had told him I was going with or without him. He probably felt guilty knowing that I would drive 90 minutes to an appointment just a few blocks from his house, just to do this. So maybe I guilt tripped him into doing it, I dunno. But I don't feel bad about it. I felt like I helped him take another little step in this awful journey.

We'll see if he shows up. But either way I am going.

Saturday, July 11, 2009

Caregiver to the Caregiver

I've decided that is my job title these days. While my Dad is the caregiver to Mom, I am the caregiver to my Dad. I am the one he comes to when he is frustrated and can't take it anymore. I am thrilled that my Dad confides in me. He doesn't have many (if ANY) confidants other than my Mom. She was always his best friend in everything. And he is grieving big time because he can't go to her and talk the way they have for the past 45 or so years.

It took a very long time for my Dad to confide in me. I think I even discussed it in a previous post. It was around this time last summer (only a year ago). I think that was the point that he had gotten past that first denial phase. Where he finally accepted that something was wrong with Mom. He's really worried about upsetting me when he tells me what he's going through. I don't mind at all, in fact I feel better knowing what is going on over there, even if it's bad stuff.

I'm having a little bit of a tough time with the way he is handling some things. But it's really not fair to say that I would do anything any better if I were in his shoes. In fact, I know I probably would have either left the country or jumped off a bridge from all the stress. So I admire him immensely for having the patience and strength to do this.

What in particular is bugging me? He has developed this routine of "packing his bags and walking out" on Mom when their arguments come to an impasse. This may sound like no big deal to people who are used to having a spouse get hissy and "leave" to make a point. But he is not that kind of guy. And geeze, you can't argue a point to a person with Alzheimers. You will NEVER win. Plus, it has got to scare the heck out of Mom, even though she acts as if it's no big deal. When I ask him why he has to do this, he says it's the only thing that "works". I disagree. He's done it a few times by now, and I think it's starting to lose it's effect. Plus, he never follows through on his threats. Now I'm not saying I want him to REALLY walk out. There has to be a better way.

I know that the grief and denial must be overwhelming for him, as it is for any spouse. I think us kids can move through the phases a little easier. But I wish he would let me help to guide him. Maybe I am, but I feel like I am just harping on him all the time to DO something. I try to take a soft, loving approach. It's so hard to hear him talk about his frustrations, and then have him back down about getting respite help with her. He's so afraid about her being mad or unhappy. He's always been a pleaser, so I can't blame him. But I don't think he realizes all the backing down might be worse for her than doing something.

If HE'S not healthy and sane, then he's not going to be able to take care of her. It's as simple as that. But he wants nothing the best for her, that's why he's taking this on himself. But how can he give his best, when he doesn't put taking care of his own needs up there on the priority list too?

I should stop for a minute and acknowledge that he HAS made some baby steps. He loves to golf. At the beginning of the season he was not golfing, or backing down when she asked him not to. Now he golfs regularly. At least 2-3 times a week. And he gets involved in some other activities, like at church with a foundation that he's a part of. I am thrilled to see him doing this. He knows it will make her unhappy when he does these things, but if he doesn't she STILL will find something to get angry about anyway, and he ends up more stressed because he feels like he can't enjoy his favorite activites.

He's also taken the step to get some help through his Doctor. His Doctor suggested some medication to help him cope months ago, and he avoided it, saying "I'm not the one who is sick here, so why should I take it." I was happy that he ultimately decided to take the step to talk to his Doctor about it and get help.

Each day is a new challenge, for all of us involved. For Mom, who has to learn to live in this strange new world of hers that she will never be able to escape. For Dad, who has to learn how to let go of the love of his life for over 45 years, and to take care of himself so he can ensure she gets the best care possible. And for me, who has to learn how to support Mom in her new world, and help keep Dad in THIS one.

Don't Know Where To Start

I really need to be writing more here about my experiences with my Mom, but sometimes it just gets so overwhelming I don't know where to start. And I really am not on the front lines of this, my Dad is. So most of my experiences occur through my Dad. I know I am not experiencing a fraction of the stress that he must be feeling. I don't see my Mom much, in fact I haven't seen her since late June when we belatedly celebrated Father's Day (since we were on vacation the previous week). I really wanted to do something special for my Dad and also give him a break from Mom. My brother, husband, and son Alex took him golfing nearby. I stayed at (my) home with Mom, and (thankfully) my niece Jodi.

I'd like to say that I handled it well, but I really didn't. I repeatedly tried to come up with topics for conversation, but each time it just left her at a dead end trying to remember something, or it would quickly result in her arguing a particular point or another, and insisting that we were wrong. Argh. It was a beautiful day outside and I was really irritated that I ended up cooped up inside. I sat down in a chair in the living room and fired up my computer, to try to show Mom the photos from our recent vacation. As I was pulling them up, I quickly chatted with a friend on Facebook, telling her of my frustration. Her advice? "Get her outside and take her for a walk around the neighborhood." Uh, yeah right. My Mom very rarely sets foot outside unless it is to go somewhere. Plus her knees are so bad that she really can't walk that fast, so I knew even if she would go for a walk, I would go bananas at her slow pace.

So I decided to show her the vacation photos. "Alzheimer's patients LOVE reminiscing," says all the books and websites. I guess I should have read that a little closer. Reminiscing implies that the person doing the reminiscing was "there" in the photos, right? She wasn't in any of the photos, but I thought for sure she would be interested in seeing pictures of her grandkids enjoying the vacation, and of my Dad (who was there with us too). She didn't give one lick. As I started to page through them, she actually fell asleep. When she was awake she would look away. No interest whatsoever.

Hmmm... maybe she'd be more engaged if SHE were in the photos! Duh. I couldn't believe I was so stupid. I cracked out a bunch of old photos of Mom that I was using to put together a scrapbook. She perked up immediately. Wow. That is one of the things about Alzheimer's that I can't get used to. It's made her so, well, selfish. I don't mean that in a bad way, and just mean the kind of selfishness you would see in a 4-year-old who really doesn't know any better. She is tuned in if the spotlight is on her, but if it's not, she will just zone out and tune out. And then get a mopey look on her face like she is being ignored. That is really going to take some getting used to.

I looked at the clock. THAT burned about 15 minutes. UGH. The guys would still be golfing for a few more hours. I don't want to sound like a whiner, but I was going nuts. I just wanted to go out, anywhere, for a run, for a bike ride, SOMETHING that was active. I felt what my Dad must be feeling day in, day out with her, being cooped up in the house. My heart ached for him.

I quickly resigned myself to the 'ol babysitter, the TV. I really don't like TV and very rarely watch it, so I had no idea where to start. Funny how I have hundreds of channels and nothing seemed worth watching. I headed for the Hallmark Channel. Good God, "Little House on the Prairie." Yes, I'll admit I was a big fan of the show when I was little, but come on, I was not watching episode after episode. I had to fill time here. I went for the Lifetime channel and settled on a movie about a woman (played by Angie Harmon) who repeatedly poisoned her adopted kids, one after the other. You know, that Munchausen Syndrome thing. How's that for family fun? Mom was pretty riveted to the movie so we watched the rest.

The movie ended. Now what? I looked at the clock. 1:30 pm. AAARRRGGGHHHH! The boys would still be out golfing for a few more hours. I had to find something else and find it fast. I fixed some snacks for us to nibble on, and keep Mom occupied while I found something else to watch.

I found a movie on Pay-Per-View that Jodi said was good, "The Curious Case of Benjamin Button". I cringed when I saw that it would tack on another $5.99 to my already astronomical cable bill. But $5.99 was a small price to pay to keep Mom engaged with us for the next few hours. She watched it and seemed to follow the story, and I brought in some snacks to make it fun. She dozed off here and there, but then would wake up with a start and keep watching. Then she started in on another little kid thing. Every time the movie would fade to another scene, she would ask "Is it over yet? It this the end?" It got pretty annoying because it happened every few minutes for the remainder of the movie (and we were only HALF way through at that point). Patience, Sue. Yeah right. I'll be the first to admit I am not a patient person.

The movie ended and I looked at the clock. It would still be an hour or so. I struggled through as best I could, and once again felt extreme sympathy for my Dad once again. How could he possibly endure this day after day? It was so boring and non-stimulating.

The boys made it back and I quickly got dinner going. I was so happy to be occupied with something. We all had an enjoyable meal and ate it outside in our gazebo. After dinner, I brought out a Key Lime Pie that I had made. As I started cutting I remembered the Alzheimer's "me first" thing, so quickly served Mom her slice first. Then I served the rest of the family. As I handed out the last piece and set the knife down she looked kind of pouty and said "What don't I get a piece?" Ohhhhh geeze. I could see glances darting around the table. I was pissed. (I know it's so stupid and juvenile, but I was feeling like I intentionally served her first so she would feel important, and she thought I forgot her. I was trying so hard to not upset her, and now I did.) Of course we didn't deal with it the way the Alzheimer's 101 manual says. I should have said, "Gee Mom, I'm sorry, here's a piece of pie" and left it at that. But I didn't. None of us did. The natural inclination is to tell her she is wrong, that she ate the first piece of pie, and then offer her PROOF by pointing out the plate in front of her with graham cracker crumbs on it. That's exactly what we did. She argued a few rounds then looked away and changed the subject. Dumb move on our part. Trying to prove anything to someone in her condition is a total waste of time.

That is one problem I have seen my Dad encounter with her over and over. He spends a lot of energy and frustration trying to prove that she is mistaken, particularly when she makes a wild accusation. Like when she accused my aunt of stealing some of her money. Dad was mortified, and set out to show her cancelled checks, bank statement, whatever, to prove that everything was all there and accounted for. What was he supposed to do? Ask her to "pay back" the money? This was a tough call, and he actually considered that at some point. Giving my aunt some money to "pay her back." I thought, geeze Dad, if you do that it is like she is admitting that she stole money. And she didn't! And I didn't want Mom to think she did. I really don't know what was the right thing to do or say regarding that, and after awhile my Dad gave up trying to prove his point, and she went on to something else.

Same with her medications. This is one of the most difficult things Dad has to do. Mom's doctor had said that she needed to listen to Dad regarding her medications, and take them when she told her to. Seems simple, right. NOT! Mom was furious and even railed on and on about it to me (which she very seldom does). "HE can't tell me what to do! I can take it myself. I'm OLDER than he is, so I am smarter about these things. He can't control me!" Ugh. Anyway, here's the scary part. She constantly skips doses of both her memory meds and heart meds. And worse yet, she has numerous time taken double doses of these meds. And when confronted with the "proof" (missing pills, which are counted out by Dad), she gets angry and insists that never ever in the history of the world has she EVER missed a dose of any medication that was ever prescribed to her. Once again "proof" doesn't mean a damn thing to a person with Alzheimers. It's a waste of time. It's going to take a long time for my Dad and I to accept this. So we will likely continue to waste time and energy proving, all the while building up the stress and frustration.