Monday, December 28, 2009

Alzheimer's Christmas Gift Idea a Success for Stimulating Activity

We are so happy about our choice in Christmas gifts this year for Pat. We purchased the Wii Puzzle Challenge game for our Nintendo Wii and it's perfect for her!

Pat likes that it shows up so big on the television screen. When we played, she guessed a couple of the answers on the normal crossword puzzles. She was also able to find a couple of the words on one of the word search puzzles the game has.

We love that you can select various degrees of difficulty for each type of puzzle. We need to operate the controllers for Pat but it is a great way to stimulate an Alzheimer's patients mind while passing the time. And it is a great way to interact.

Right now Amazon is offering a discount on accessories for Wii's so stock up now!

Sunday, December 27, 2009

The Weekend Without Alzheimer's

Well, it's Sunday and we have been without Pat since Thursday evening. At first, we weren't sure what to do with ourselves. You get used to ALWAYS worrying about that person. "Shhh, be quiet you'll wake her... did you brush your teeth, put your boots on... yes we're going somewhere... put your boots on... of course you are going with us... put your boots on... of course you have your pocketbook." You get the idea and it never ends. If you aren't thinking of answers to her questions, you are thinking of ways to avoid those questions. And in all the silent times you are thinking about how crappy this disease is, how it used to be, what coud be, and what ultimately will be. So when we are away from her it takes time to adjust.

So, being Christmas, we were more emotional than normal. Visiting with a friend, a few drinks, and the atmosphere of the Christmas tree lights, burning candle, and quiet music playing had our guard down when our friend started talking to us about Pat and told us no one would blame us if we couldn't continue to care for her. We talked a lot that night about her, sharing funny stories about our current situation. We laughed so hard that it turned to tears for me.

Oh, this disease stinks. And we can't walk away. As we told stories about her, you could hear the endearment in our voices. We love her. And just because she can be annoying, frustrating, and difficult beyond what any of us could imagine someone to be, we love her.

We have enjoyed the rest for our minds, voices, and patience this weekend. Our weekend away from Pat has given us the break we needed. Having an extra day away made the difference and we actually got beyond the "wind down stage." Tomorrow morning we'll be ready to jump into caregiving again, no matter what we find.

Monday, December 21, 2009

Alzheimer's & The Christmas Holiday

Christmas time can be confusing and exhausting for an Alzheimer's patient. It can also be a positive experience.

Like most things, I can't tell how Pat will react. At least, not until I see her facial expression change, her hands start to shake, and the confusion fully planted behind her eyes, and by then it is too late. I'm sure this is the case for most caregivers.

There is no blueprint for Alzheimer's patients. While there are similiarities, it is not cut and dry. I thought I would point that out before discussing how our Christmas preparations with Pat are going.

This weekend was the launch of our "Christmas season". We began with decorating the tree and sugar cookie making. Pat did okay with both. Last year she could care less about the tree but this year she hung a few different ornaments without direction or hesitation. The sugar cookies were a hit for her too. It took us a while to get her out to the table. Once I realized it was because she thought we wanted her to cook the cookies, I was able to coax her out. She thoroughly enjoyed  our mistakes and various candies that didn't fit the color scheme.

Sunday was the party with her family. That morning she signed her cards without much confusion and we were done within 20 minutes! I had expected it to go a lot slower for her, but I think having something to focus her mind on, grounded her. Plus, we left around noon and had the party earlier than normal so she would be at her best point during the day.

Getting out the door was a little stressful. The normal worries about hat, boots, the newest confusion about my coat being hers, and we were off. The ride up was quiet. I tried to keep her focused on where we were going by talking about seeing the kids and grandchildren, but she couldn't retain it.

Once we got there, out of the car with the normal sneakers in the plastic bag, gloves put back on, getting her legs under her, shuffle to the steps, in the door, okay- go all the way through... ahhhh, we had a great time!

It was so nice to see her laughing... and living. Her whole family was there and my heart welled with happiness for her. It is so hard to get everyone together and I know it is what she needs. She needs more than Mark and I, especially during the holidays. She needs those warm hugs from those she loves the most. When I see her hug others, I feel she is trying to hang on with each one.

This morning she remembered yesterdays party still. She slept past 7:30 until 10:30! We started to worry because she NEVER sleeps in. She seems to be happier today. By tonight she may not remember any of it but she had it for a while.

So far Christmas has been fun for her and us. It is going to seem so strange without her here on Christmas morning because she is such a big part of the family. Still, it will be nice to wake up Christmas morning and not have to tell her that it is indeed Christmas day over and over and over again. Pat will be with other family this year for Christmas and I think that's great! They can give her the Christmas cheer and extra love she needs this year.

Tuesday, December 15, 2009

Coming Home Isn't Always Sweet

We picked Pat up yesterday morning from her daughter's. It went okay. She was still sleeping and I had to wake her up and that is out of the norm. She was confused when her daughter came in but her daughter just acted like it was normal for her to go to work, kissed her mom goodbye, and breezed out. It works so much better than trying to "make it okay" because we will NEVER be able to make it okay for Pat. I quickly got her dressed, ready, and out the door before she had time to panic. Breakfast was fine, coming home was fine, and I took care of her clothes before she had time to notice them so that went well.

Then we went to my Dad's and she was very confused. She was upset that Mark didn't know where she was and how would she get home and where were her house keys, and on and on. I was able to reason with her that she lives with me, but I realized for the first time, this could be a problem eventually. We know a lot could get worse quick.

Even today, she is more confused. She has asked about her daughter coming here, even though she isn't. She remembers, somewhere in the clouds, something about her daughter, but doesn't remember the entire weekend. I feel bad for Pat to lose so much time. We all talk about how we need more time. Maybe we should feel lucky for all the things that make us busy. She has nothing but time on her hands and each step fades in to nothing behind her, like she was never there.

As the days go by, Pat declines, but only a little here and a little there. I hate this disease. It's impossible to gauge, study, and ainticipate what will happen. At times, we can figure what is triggering a certain reaction, but most of the time we can't so frustration sets in for us... and her.

We get frustrated and have to walk away... but we always want to come back. We know there will be a time, but right now, this is where she needs to be. Maybe just as much for our piece of mind as for hers. We missed Pat while she was gone. Don't get me wrong, we enjoyed our carefree, much needed weekend, but there was a spot where she was supposed to be. And we both felt it.

So I guess when I think about it, it was sweet for her to come home. Yes she was confused and a lot more edgy than most days, but this is where she belongs. This is her home where she has her bedroom, her routine, and her caregivers. And I think deep down she must know that.

Friday, December 11, 2009

Long Needed Break from Alzheimer's Patient

Pat is going to her daughters this weekend and I am giddy! It has taken me a while to feel that way. I used to feel like I was weak and ditching my responsiblities everytime I left her. Now, I know I need a break. As the disease worsens and the woman I know disappears, common courtesies go out the window. And it wears a person down. It's hard to keep your calm with a child that never lets up.

I need to remind myself this break is not a typical break from Pat. We get a one hour break per week from Pat. And in that hour we run around like mad people doing all of our errands. Yes, we can take her with us, but sometimes we just don't have the time... or patience, to shuffle through the store, saying hello to people we don't know. Mark and I make our small hour break about her so what kind of break is that really? We are still thinking about her. "What medicines need to be picked up, groceries - make sure we have the Little Debbies, okay let's split up at this store because we only have 20 minutes left, and okay lets go pick her up..." I am usually exhausted after that hour break.

This weekend I am not doing anything for Pat except a little Christmas shopping. I don't need to straighten her room or throw out her "collected treasures" that she has picked up and stored away. This weekend it is all about what I need. Without that selfish focus, I won't have the strength, patience, love and faith it takes to provide the love Pat needs. We all need a little me time.

Wednesday, December 9, 2009

Why Do Alzheimer's Patients Lash Out at Family?

One of the hardest things for families, from what I have heard, is how the Alzheimer's person treats their closest relatives. I don't know how many times I have heard a story about hateful a parent is to their child or spouse. Remember that. I have heard that story SO MANY TIMES. It isn't because it is you. It's how the disease works. It's just another reason I think Alzheimer's is the worst disease out there.

I see Mark's frustration with his mom's anger. And I think he's shocked by it when it happens and a little hurt, especially because my interactions are completely opposite. Pat thanks me, loves me, and trusts me. On occassion, she will get upset with me but it's out of frustration more than anything else.

I don't have the answers to why Alzheimer's patients sometimes act worse around family members than caregivers. But I do have my opinions about it.

I think with Mark a lot of times he forgets that she is sick. He insists on correcting her, reminding her, and teaching her. I just play along with her. Sometimes I correct her but if she starts to get irritated, I just say, "oh, okay Pat." A lot of times what she says doesn't make much sense and I just get tired of repeating myself. I don't think keeping her oriented is as important as keeping her happy.

I don't believe he corrects her so much because he is being mean. He corrects her because it is a natural reaction to correct someone who is doing something wrong or has forgotten something. And he may do it because, well, it's his mom. And he knows what a smart person she has always been. Maybe deep down correcting her is a try at "fixing" her disease.

I think it is easier for an outsider to care for someone with Alzheimer's because they have no expectations. I met Pat  in the very early stages of Alzheimer's, before anyone knew she had it. I had nothing to compare her behavior to. I have always known her as a frightened, worried woman and I have always reached out to her in a caregiver sort of role. I can't imagine what it is like to watch a strong woman like Pat slip away. It would be hard not to react.

Her reactions to Mark are compiled with stress, confusion, frustration, and a feeling of loss. She is his mom and now he is telling her what to do. That's hard to take when the roles reverse. She doesn't know she is driving us crazy with repetition, worry, and deceitful behavior. And while she remembers sometimes that she lives with us, I'm sure she isn't thinking it is so we can keep an eye on her. She looks at us like we are stealing her independence. 77 years old and everybody is telling her what to do. You would lash out too.

As I said before, these are my opinions and not medically explored. I live this situation every day.

Thursday, December 3, 2009

No Rhyme or Reason with Alzheimer's

There is no "figuring out" Alzheimer's. Once you think you have, things change.

Our water comes from a well so we need to watch the amount of water we use. Plus, as a concern for our planet, we try to conserve water.

Sometimes Pat forgets she went to the bathroom so she will go in 5 or 6 times before bed. We have told her a hundred times not to flush when she just goes pee, but she always does. It's not her fault that she doesn't remember. To help her, Mark made a sign that read: Don't flush when you pee.

As harmless as this sign was, it created a world of problems. She got incredibly confused, and everytime she went in to the bathroom, she would come back out and ask what she was supposed to do. Finally I removed the sign.

I thought removing the sign would make things go back to normal, but she rememberd that sign! This morning she was very upset because she thought we were against her and didn't want her to go to the bathroom. We expected her to just forget about the sign, like she does with everything else, but she didn't. There is just no rhyme or reason with Alzheimer's!

Wednesday, December 2, 2009

Dealing with Alzheimer's Stress Levels

It's no surprise that popular Alzheimer's websites like offer free stress checks for Alzheimer's caregivers. It's the most stressful thing I've ever done. And it's emotionally draining. Don't get me wrong, I want to be here. I made that choice and will take care of Pat for as long as I am able, but it's still stressful at times.

Life is full of stressors without Alzheimer's in the mix and bottom line, Alzheimer's doesn't stop for colds, headaches, bedtime or other stressors. It knows no boundaries.

Something that my mother has told me a thousand times comes to mind right now: You can only control yourself and your reactions. And that is so true. I may be able to curb Pat's reactions but not all the time. It needs to start with me. The calmer I am with Pat, the easier she calms down or accepts what I have told her as truth.

Sometimes my calming voice doesn't reach her, but still if I control my demeanor around her, it helps me too. I used to be a telemarketer and the biggest technique taught to us was the most basic, smile before you call. If you just take the time to smile instead of react, it relieves the tension and opens the door for a positive attitude.

So remember, when it gets tough, smile. Fake it at first if you have to. Remind yourself, you can only control your actions. And you are only responsible for your actions. Do your best and leave the rest!