Wednesday, August 12, 2009

Roller Coaster

Ugh! Having a loved one with Alzheimer's is just like riding a gut-wrenching roller coaster, one of those coasters that goes upside down over and over, and suspends you up in the air where you never know when you are going to drop. A few weeks ago I wrote about a party we had where my Mom was acting pretty normal. Apparently that was not the norm, and we've discovered that in the last few weeks.

After I pushed my Dad into going to the assisted living place to check it out, I noticed that the "run away" emergencies had tapered off. I was afraid that perhaps I pissed him off so much that he retreated even further into his shell and had decided to just avoid telling me about things that were happening. Well, I think that is not quite true. His doctor had given him some medication to help him cope, and it seems that the medication is helping him. No "normal" person likes to be put on medication solely to be able to cope with a sick person. But in my dad's case, it was a good move.

Over those few weeks, I just wasn't getting much information, so assumed that "all was well". It wasn't. Although he got her on a steady schedule of taking her meds correctly, every once in awhile something would get messed up and she would get her hands on the meds and double dose something. This always resulted in some sort of fight or difficulty the following day. I found out about some of these incidents accidentally. This really frustrated me because I felt that my Dad was no longer confiding in me about these problems. I didn't want him to suffer in silence.

Several of these incidents occurred on days he was to go golfing. I think that Mom panics when she senses he is going to "leave" her, so she wigs out when he goes. Sometimes things escalate to the point where he is forced to cancel, but some times he just puts his foot down and goes. In these cases she thinks he has "left her for good". When I hear about these incidents (usually from my Mom's sister, who she often calls when she feels lonely) I know that he is just golfing and will eventually be home around 3 pm.

I really don't think that she should be left alone anymore. My dad doesn't agree with this, but I think he probably does agree, but doesn't want to lose the tiny shred of independence he has left, and doesn't want the hassle of lining up someone to stay with her. I think he lets her make way too many decisions and do way too many things for herself that he should be managing. Of course it is easy for me to say all that, because I am not the one who has to deal with her moment to moment. When I voice my frustrations to my aunt, who grew up with my Mom, she says that she totally empathizes with him and fears her sister in the same way. Mom was a very independent, take charge person. Telling her what to do was not an option, throughout her life. When there was something she didn't want to face or admit, pushing her would just piss her off. Thing is, she is not that same person anymore. But it's hard to undo all the years of "programming."

A few weekends ago I called Mom and Dad on a Sunday night. I hadn't heard from them for a few days, which still bothers me because if I don't call I generally don't hear from them. Again, it's the programming, throughout my life Mom was the one to always call. She was chatty and in the conversation she matter-of-factly said "Oh, I blacked out at church today." What? I was shocked. This sounded similar to a blackout a few weeks before where my Dad said he had called 911, then cancelled the call when she came to and told him she was fine. The details she gave me were all jumbled, and I really wanted to talk to my Dad to get the story straight. She said he had gone to bed. Funny, I thought I heard him in the background trying to correct her details when she was telling me the story. I signed off shortly thereafter and pounded out an email.

Dad confirmed the next morning that the situation was similar to the other blackout she had. I was way irritated that he didn't think that 2 blackouts justified an immediate visit to her Doctor or at least a phone call to the Doctor. He seemed too lax about it, saying that she had appointments coming up later in the month, and that they would mention it when they went. I was frustrated so I called the 24-hour help line at the Alzheimer's Association. They had a counselor call me back, which ended up being while I was shopping at Target. I stood in the aisle detailing the situation. The counselor said that these were not typical Alzheimer's symptoms, and warranted a visit to the Doctor immediately. She was concerned that Mom might be having a stroke, or a conflict with her medications. I passed on this info to Dad and decided to back off. I told the counselor of my frustration with not hearing from my Dad anymore. She said that I shouldn't stop with the "advice" because he likely WAS listening, just was trying to process and implement things when he was ready.

Last Saturday we had another birthday party. Mom was way different than last time. She didn't talk much, and shuffled in like a 90-year-old. She had a confused, bewildered look on her face and was not very talkative. My cousin Katie was here with her family, and had not seen Mom in several years. She told me later she was shocked at how old and out of it she was. It really blew her away. And she was shocked at how little Mom had to say. In the past at any given get together my Mom was usually the biggest yapper. Mom did look like a little old lady. She had her pants hiked up so high that the bottoms were at least 5 inches from the tops of her shoes. Total floods. This is weird, she is 5'1" and has always had to hem her pants because they were too long. She looked ridiculous, and didn't seem to care. And it was the same damn pair of blue pants she wears every day.

Monday morning I heard my cell phone ringing. I looked at the caller ID and saw that it was my Dad calling from his cell phone. My stomach sank. He only called from his cell phone when there was a crisis and he had "run away". I picked up tentatively, and he said that Mom was in the hospital. She had another blackout incident that morning and he took her to the hospital. I don't think he forced her, I think that she told him she felt so strange that she wanted to go there. She was having a CT scan done right that moment. I got all the details and hung up, sort of relieved that they were finally going to find out what was causing the blackouts. I made arrangements to head that way to the hospital later that day.

Late afternoon I showed up at the hospital and Mom was thrilled to see me. We had a fun conversation and everything seemed upbeat. She was complaining about her socks being tight, so I offered to put on the pair of hospital socks that were all stretchy and had the grippy things all over them. She said yes, then proceeded to criticize the socks, saying they were "strangling" her, and that I put them on upside down. So much drama!

She kept scratching at her head and said she had bumps there that hurt. I took a look at the bumps and they were crusty dark red/purple patches. Ewww. I was worried it might be skin cancer, they were so ugly. We told her to be sure to mention it to the Doctor when he came by. The next morning, I found out that the Doctor was there before my Dad got there. That was disappointing, because we had to depend on Mom to tell us what he said. Apparently, she wasn't having a stroke, the tests were normal, but the spots were Shingles. Now that it was determined she had Shingles, which is infectious, they had to move her to the "infectious" area of the hospital.

When it got around time for me to leave, the nurse came in to move Mom's IV to her other arm. Mom thought she was going home. When she realized that she was staying the night in the hospital, she was mortified. She sat there like a confused, petulant little kid saying that she was not staying the night. It took about 45 minutes of coaxing. This pattern repeated itself later after I left and again the following day.

She is supposed to be released this morning, with no answers as to why she had the fainting spells. All the tests were normal, and the only thing she left with was a diagnosis of Shingles. So for now there is nothing to do other than get the shingles under control, and watch and wait for the next crisis to strike.

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.

Tuesday, June 9, 2009

When It All Began

I'm sure it's impossible to pinpoint when dementia "starts" for a person. I think most people start counting from a particular event or situation which smacks the caregiver or family in the face that says "something is REALLY wrong here" and that the issues are more than simply just aging. And that event for me was the death of my grandpa, Charles Mitchell, on March 25, 2007. He had passed away while my parents were in Florida. And my Mom refused to come home to attend the funeral.

At the time, I was not aware of all the factors that had gone into her decision not to go. I just thought that it was the most ridiculous thing ever that she would not make the effort to come back. It made no sense to me, and I told her so. It made no sense to her brothers and sisters either, who were as confused as I was, and a couple of them told me so. I tried to plead with my Mom to come, and she just shut me down with excuses so ridiculous it was comical. "Daddy has to golf that day," she said. "Daddy has to wallpaper the bedroom." "We have to go to Costco." "I am too old to make such a long trip." "We can't afford the airfare." I was expecting "The dog ate my homework" next. But never once did she mention the "real" reason she had decided not to come, which I didn't even find out until a few weeks ago.

Truth is, my grandpa had dementia and pretty much spent his final year wasting away in misery in a nursing home. He became a very bitter, angry man late in his illness, which is a side of him I heard about but never experienced first hand. I'm a little embarrassed to admit that late in his illness (and my grandma's too) I just got so scared to see him that way, so scared that I wimped out of going to see them. Part of me didn't want to believe the horrible stories I was hearing about things he'd say to his children, and how poorly he treated them. Suspicions, accusations, just horrible, horrible things. It scared the crap out of me, because the only "Poppy" I knew (and cared to remember) was the one who would lovingly wrestle me into his lap as a kid and ask me for a "squeezer" (which was his word for a big hug).

My Mom would often tell me stories of all the horrible things she would encounter when she went to visit him and my Grandma. But she never said anything about it bothering her to me. She seemed to be well aware that it was the disease talking, and didn't seem to be taking anything too personally. I was wrong.

A few weeks ago in a chat with my Dad, he admitted to me that she didn't come back for the funeral because she was so angry with him for saying all of those horrible things during his illness. She took it all personally, and resented him, big time. She had never mentioned this in her laundry list of excuses. And had she, I think I might have at least understood a little better. It's easy to say that now, of course.

The funeral itself was one of the most difficult experiences of my life. Not because I was overwhelmingly close with my Grandpa (I loved him dearly though), but because I was so humiliated that my Mom, the oldest of the 7 children, was not there for her mother, and for her brothers and sisters. My brother and I went as overboard as we could to compensate. I was there for the entire visitation, brought tons of food, tried to do anything I could think of to show my Mom's family that even though my Mom didn't think this was important, I did. It was excrutiating to have old friends, neighbors, and distant relatives come up to me and ask "Where's Linda?" It was hard to respond with any of the lame excuses she had given me. It was all the more embarrassing because my 3 cousins from Florida ALL made the trip, regardless of the fact that it must have been a tremendous financial burden to them.

I know now that my Mom was grieving, just handling it in a much different way, and was (mentally) ill while she was trying to handle it. This event was the first big red flag that made us (me and some of our family members) take note and realize that something was wrong with Linda. Something MORE than just aging. And once again, I think deep down somewhere in that head of hers SHE realized that something was going wrong. How scary it must have been and must still be. With every passing month, week, day after that point it was clear she was headed down the same path as her parents. Even as she continues to this day to deny it (and deny her parents ever had any dementia problems at all), I'll bet somewhere in there she knows what is happening and is scared to death.

Monday, June 8, 2009

The World's Crookedest Street

For my Mom, memory lane is like the world's crookedest street. Or at least that's what it seemed like after I spent the day with her last Sunday. The plan for the day was to sift through old photos together, so that I could select my favorites for the scrapbooks that I am going to create about my Mom's life. She was excited to do that together, and I could tell she loved the attention, but it seemed weird that she never asked "why are you doing this?" It's like somewhere there in her brain she knows what is happening to her, but she continues to act as if all is well. If someone all of a sudden started gathering up pictures of me, I'd be a little suspicious.

The plan was for my husband and I to go over there for the day, and Mom and I were going to sift through photos while my Dad had a chance to catch up on some emails and then he and Paul went to golf. The experience was pleasant enough, but there were a bunch of weird, off-the-wall things that happened that really made it a roller coaster for me. When I first sat down, my Mom grabbed a box containing photos of her high school years. This box had dozens of those individual senior photos of a bunch of friends. Mom sifted through them and remembered explicit details about each of these people. She particularly focused on old boyfriends, and repeated the same stories about these guys over and over. I was fascinated that she remembered so much about those people so long ago. I began to think "Geeze, maybe her memory is not as bad as we all think it is".

It was really weird. I would dig to find unusual photos and quiz her on them. Where was this house, Mom? Which bedroom was this? Who is this person? In most cases she got all the answers right. But what was really bizarre is that when it got to a certain point in time, she pretty much was clueless. We came across a picture of Bob, my son Alex's father, who died in 1999. She looked at it and said "He's such a nice guy, Sue, where is he living now?" Uhhhhh.... I was stumped. It was hard to bit my tongue, so I didn't. "Mom," I said, "Uhhhh... he's "living" in Heaven. He died in a car crash in 1999." She looked at me quizzically, said "Really, oh that's too bad." and then went on talking about something else. It was hard not to be mortified.

It was almost like after some time in the mid 1990s, the information just got all mixed up. I pulled out a family photo taken at a cookout. This was a huge group picture of (most of) her entire family (she comes from a family of 7 kids) with their kids and respective spouses, her parents, children and grandchildren. She looked all confused-like at the picture then got disgusted and tossed it aside commenting "I don't know why we would bother taking a family photo with a bunch of strangers in it." I laughed, it was quite funny actually, because there were several of us (my brother and I included) pictured with EX-spouses who were no longer in the picture. I pointed out that at the time, these people WERE family. She started to argue and say she didn't even know them. The funny thing was she would point to them one by one and say "He's the biggest jerk" or "I hate her". So while claiming to not know these "strangers", somewhere in the depths of her brain she "knew" how she was "supposed" to feel. Even while claiming to not know these people, she would remember little gossipy details about a "stranger" but not even remember their name. So weird.

Another weird thing was with pictures of her parents. This is where I got really sad. Throughout my entire life, I remember my Mom having a very positive relationship with her parents. She would see them often, help them out financially here and there, and talk with them regularly on the phone. Very occasionally would I hear any complaints, but they were all just the typical griping you hear anyone say about their parents. Once her parents became ill (early 2000s) she gradually became more and more negative about her parents. More on that story in the next post (it's worthy of it's own post). Funny thing is, her parents suffered from the very same diseases (her Dad from dementia, Mom from Alzheimer's). Anyway, as we would come across the pictures of them (from any point in time), she would look at them with disgust, make a snide comment, and not talk about them at all. So sad.

At one point I made an observation that she was wearing the same dress in 3 different prom pictures, all in different years with different dates. She snarled about it that it was all because her Mom was so selfish she wouldn't ever buy her a new dress, she made her wear the same dress so that she would buy a new dress for herself. The comment was dripping in resentment and anger. I know my Grandma had a taste for nice clothes and all, but geeze, what was the big deal? I had seen the pictures before, but never had she been so mean about it.

When we sat at dinner later she was really struggling to read her menu and choose something. She knew what she wanted, but couldn't locate it on the menu, so ordered the easiest thing to find, which we all knew at the table was something she didn't like. Luckily we all could see she was struggling and not wanting to draw attention to the fact that she was confused, so we clarified her order with her verbally, that she indeed wanted the Filet, but she insisted on calling it the "Triple Combo", which was the Filet with two other items that she didn't like at all. I think it was the only paragraph she could find the word "Filet" in, so she insisted on ordering it.

Last week I had the Geek Squad out to fix my computer. The diagnosis ended up being "bad sectors". Well that, and there was way too much stuff on my computer! The technician easily fixed my bad sectors with a repair disk in a matter of minutes. He left, and all was well with my computer. I had been very stressed about the potential of losing data, and stressed that several "vital" software programs were not working for me. After awhile it kicked in that my Mom has "bad sectors" too. But her bad sectors can't be repaired, ever. What a helpless feeling. Can't call the Geek Squad to fix THIS problem. Can't "reinstall Windows" either. We're just stuck with what we've got, and we have to deal with it, and work around it, as her "system" continues to fail and more bad sectors develop to the point where the system doesn't work at all.

Argh. I am SO not ready for this.

Monday, June 1, 2009

Death in Slow Motion

After blogging for a few years about things I enjoy, my family adventures, marathon running and exercise, financial security, and my goofy Great Dane Nova, I have found that I need to blog about another subject that unfortunately is NOT enjoyable. This blog will be focused on discussing my 66-year-old mother's decent into Alzheimer's and dementia. I can't think of anything better to call it now other than "Lost on Memory Lane".

It's hard to know where to start, because so much has happened in the last few years to get us to the point we are at now. Rather than backtracking and starting from the beginning here, I will just talk about where we are at now, today, and then backtrack little by little over the course of future posts. I thought I would start with a picture of Mom and Dad, taken last weekend when my family came to see me run my first marathon:

My mom, Linda, is 66 years old right now, and from what I can remember, has been exhibiting signs of memory loss for a few years. At this point in time, all the information I've read leads me to believe that she is about a Stage 4, going on Stage 5. It's hard to place when it all began, but it all became noticeable a few years ago when both of my grandparents (mom's parents) battled Alzheimer's and dementia for years, both in their home and ultimately in a nursing home. Mom's deterioration became REALLY noticeable last fall, and since then, it has just been getting worse and worse. Trouble is, she was "kind of" diagnosed by a Doctor she didn't know (she has a hard time sticking with Doctors), but as of yet there is no official diagnosis. Today she is meeting with a second neurologist.

But anyway, it's not like we have any question about the diagnosis, we are more trying to figure out what to do, and how to do it. See, the most troubling thing about Mom's situation is that she will not admit there is a single thing wrong with her. She is in such denial it is comical. And the fact that she won't cooperate with my Dad's effort do help her (or she fights him the whole way) make it so much harder.

I have heard Alzheimers and Dementia referred to as "death in slow motion". That is so true. We've only just begun this awful journey, and that is soooooo depressing. There is so much more grief and loss ahead. I've done a lot of thinking about this long goodbye that is ahead. Of course I wish that this did not happen to her, geeze she's only in her 60s, and her parents were in their 80s when they had to deal with this. That in itself is so scary. This has really got to be the worst way for a loved one to go. Well, the worst way for a loved one to go. That's one of the blessings, is that people who suffer from this are generally feeling good about their life, fulfilled and happy. Well, at least until the later stages. The biggest toll is on the family, the caregivers.

In this case, the caregiver is my dad, John. It is so heartbreaking to see my vibrant, active, intelligent Dad in this role, because it is so frustrating and stressful for him. My entire life he has been a role model to me. No where else on this earth is there a man who is as committed and with as much integrity as my Dad. He spent nearly 30 years in the work world, climbing the corporate ladder, all the way being honest, trustworthy, and an incredibly hard worker, devoted to his family. His success brought him a wonderful, comfortable life, with a gorgeous home, a beachfront condo in Florida, financial security, enjoyable hobbies and interests, all that stuff. Back when he retired I'll bet he had visions of a wonderful life in retirement. I can't imagine he ever thought that THIS would be his retirement.
Nowadays, his life is consumed with caring for my Mom. It's taken a toll on his health (he has a lot of stomach issues). The most stressful aspect for him is that he just can't seem to keep her happy. My Dad likes peace, and I think nothing eats away at him more than for him to know of think that someone is not happy with him, or disappointed in him. My Mom dishes this out 24-7, and it is just eating him alive. I totally understand how he feels, I have inherited his sensitive side, and like him, very often tend to take things WAY too personally.

One blessing in all of this thus far (I try hard to look for those), is that my relationship with my Dad has grown immensely. I have always had a great relationship with him throughout my life, but never as a close confidant, which is what I have become now. He is watching his best friend of nearly 50 YEARS fade away, day by day. She is/was truly his best friend. He has many acquaintances and friends, but she was his only confidant all those years. It's taking him some time to begin to trust others and confide in them. I'm just glad that I can be there to help fill the void this disease is leaving.

I am grieving very much like my Dad too, because my Mom was pretty much my closest female confidant my entire life. I have always been one to shy away from close female relationships (don't know why), and generally my closest confidant was always whatever man I happened to be dating or married to at the time. But my Mom was always my "gal pal", although in terms of interests and lifestyle we had very little in common. It's hard to not be able to pick up the phone and talk to her about something that upset me that day. Oftentimes now, I just keep it inside, or journal about it, and very occasionally try to talk to someone about it. But I just can't seem to find someone who would listen to me quite the way she would.